Tag Archives: health

Friday Feelings with A Chronic Voice

Hey there, hi there, ho there!

Sorry we are late to the party this week. I’ll explain in my post tomorrow why I am late.

Anyway, this week I spoke to Sheryl from A Chronic Voice. Sheryl suffers from antiphospholipid syndrome (a blood clotting disorder), Lupus (SLE), Sjögren’s Syndrome, Epilepsy, PSVT (a heart rhythm disorder), a repaired mitral valve, osteoporosis from long term steroids, and couple more illnesses. You can find Sheryl on Facebook, Twitter and Instagram.

My name is Sheryl and I’m from Singapore, a sunny island in Southeast Asia. Writing and travelling are my two biggest passions in life (I know, cliché, but it’s true ;)). Other hobbies I’ve been dabbling with of late include flower arrangement and learning French.

I used to work in an ad agency as a frontend web developer, but had to quit as the stress was literally killing me (needed blood transfusions). I am still trying to find ways to balance my health while earning a living. I feel very fortunate to have such supportive loved ones.

I blog over at A Chronic Voice and Journey Jot (albeit much neglected). I am trying to find ways to merge the two 🙂

So now that we know a little about Sheryl, let’s look at her Friday Feelings entry.

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“Dear Diary,

It’s Friday and most people are out partying the night away. I am perfectly content that I’m at home, having a normal home-cooked meal or pizza with my partner, watching a movie. Sometimes we go for a spontaneous walk or outing. We do make an effort to dress up and go out once a month however, either for a dinner date, or to meet some new people. I feel that this is important even though I’d rather stay in, because I do not want to lose touch with the world. It’s so easy to become trapped in our own without even realising it, which creates tunnel visions and narrow minds.

Right now, I’m not in that much pain, so I’m all chummy with it. I think to myself, ‘oh, there’s plenty I can learn from pain.’ I’ll probably change my stance when it comes back with a sadistic grin…which should be soon as I have a surgery scheduled on Monday 😉

There is no future with chronic illness. To clarify, I don’t even know what’s up for tomorrow. I will have a rough idea only when I open my eyes in the morning. There is an underlying worry, for sure. I think to myself, ‘I am already so weak physically and unstable financially now. What more in 20 years time, when we all become naturally less resilient?’

Then again, I don’t feel as miserable as I used to anymore. I have come to realise that it is ridiculous to compare myself to the rest of society. Put it this way – if chronic illness and being in pain was the norm, how would the average person behave? From that perspective, I think I’m doing okay. My loved ones always say to me, ‘take it one day at a time, that’s all you can do’. And I think it’s getting drilled into my head pretty good.

Since I’ve become active on Facebook with my blog (I never really posted much before that), I think people have become more sensitive when they are around me. This is both a good and bad thing. While they are more compassionate, there is also a vibe of walking on eggshells, which I don’t like.

Strangers on the other hand are quick to judge anything invisible; I do that myself. But surprisingly, there are those with chronic illnesses who judge you harsher than society. Almost as if they have become so bitter and so engrossed with their illness, that they claim ‘ownership’ over it. And that’s risky behaviour which I hope I never sink too deeply into.

Thank you for taking the time to read my diary entry, and wishing you a fabulous week ahead!”

A big thank you to Sheryl for taking part in Friday Feelings despite having to prep for surgery tomorrow!

Can you relate to Sheryl’s entry? Do you find people walk around on eggshells around you or have you noticed competitiveness in chronic illness circles? You can comment below and let us know your thoughts. You can also follow Sheryl on Pinterest and Google+

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

So until tomorrow,

Z.M

x

 

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Dear Minister Harris- aren’t you forgetting someone?

In 2016 the Dáil has passed a bill to make cannabis available in Ireland for medicinal use, after the Government said it would not oppose the legislation. People Before Profit TD Gino Kenny, the bill seeks to legalise and regulate cannabis products, which are used for medical purposes. Mr Kenny said his bill intended to make cannabis available to those with chronic pain, epilepsy, cancer, MS, Fibromyalgia and, under a doctor’s recommendation, would help to alleviate symptoms of illness.

Minister for Health, Simon Harris said that although he has concerns about some elements of the bill, he will not oppose its progression to Committee Stage. Mr Harris asked the Health Products Regulatory Authority (HPRA) to advise him on the scientific and clinical value of cannabis as a medicine. He said he wants to receive that advice from the agency before progressing the legislation any further.

The Minister also indicated that amendments would have to be made to the proposed bill to avoid the unintended effect of making cannabis legal for recreational use.

Minister Harris said he strongly believes that Ireland needs to take a look at policy in relation to medicinal cannabis, saying a number of countries have already taken the steps to make it available. He said he has met a number of patients and patient groups over the last few months who have highlighted their belief that it could relieve pain.

After the HPRA released their report, Mr Harris then released a statement about how things will most likely go ahead in regards to the use of Medical Cannabis. Check out this extract:

“The report stated that patients accessing cannabis through the programme should be under the care of a medical consultant
Medicinal cannabis will be made available to patients in the Republic of Ireland with certain types conditions. I’ve asked my officials now to outline to me how quickly I can put a compassionate access programme in place.
The minister thanked the Health Products Regulatory Authority (HPRA) and the members of the Expert Review Group for their work on the report which he described as a “milestone” in the development of policy on medicinal cannabis.

“This report marks a significant milestone in developing policy in this area. This is something I am eager to progress but I am also obligated to proceed on the basis of the best clinical advice. The report notes that this is ultimately a societal and policy decision and I have decided to proceed with the advice of the HPRA and establish an access programme for cannabis-based treatments for certain conditions, where patients have not responded to other treatments and there is some evidence that cannabis may be effective,” Mr Harris said.

The HPRA report advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with:

Spasticity associated with multiple sclerosis resistant to all standard therapies and interventions whilst under expert medical supervision.
Intractable nausea and vomiting associated with chemotherapy, despite the use of standard anti-emetic regimes whilst under expert medical supervision.
Severe, refractory (treatment-resistant) epilepsy that has failed to respond to standard anticonvulsant medications whilst under expert medical supervision.

Now, I am delighted that those suffering from the conditions mentioned above will get relief by using Cannabis but, I have a very big concern. What about those of us with chronic pain? What happened that we have become excluded from the list?

In his letter published on chronicpain.ie, Professor David P. Finn, PhD states:

“We now know from thousands of peer-reviewed scientific publications that the endocannabinoid system plays a key role in regulating physiological processes including pain, stress/anxiety, appetite, learning, memory and cell development.

Multiple laboratory and clinical studies support the effectiveness of cannabinoids for the treatment of a wide range of disorders, including chronic pain, multiple sclerosis, epilepsy and others. Further randomised, double-blind controlled clinical trials looking at larger patient numbers and over longer time frames would certainly be welcome.

Evidence to date suggests that the adverse side-effects of cannabinoids used in a clinical context are mostly mild, and not overtly serious or life-threatening.

We should also remember that cannabis plants can vary considerably, with different strains containing very different contents of THC (the constituent responsible for the ‘high’), and with over 100 different cannabinoids present in varying amounts across different strains, many of which do not have abuse potential but may still have significant therapeutic potential (e.g. cannabidiol)

There is no strong rationale for treating cannabinoids any differently than, for example, opioid drugs such as codeine or morphine, both of which are derived from a plant (the opium poppy), have been mainstays in modern medicine for decades, have abuse potential, and whose adverse effects, dependence liability and potential for harm are in fact significantly greater than those of cannabinoids.”

Professor Finn PhD is Professor of Pharmacology and Therapeutics in the National University of Ireland Galway and President of the Irish Pain Society.

I take 5,000 pills a year for my pain. 5,000. Let’s say I continue on these doses and I live to the ripe old age of 80. That’s 250,000 pills. A quarter of a million pills. In comparison to some of my friends, that’s a very low figure.

What happens to our bodies when we are on opiates long term?

Long term opiate use can cause veins to collapse

Can cause sedation

Can slow the digestive system (Gastroparesis)

Can cause greater sensitivity to pain (Hyperalgesia)

Can cause muscle rigidity

Can make the immune system weak

Can cause respiratory depression

Can cause twitching of the muscles (Myoclonus)

Can cause Hormonal Dysfunction

Can increase the risk of depression

the list goes on and on. I can’t imagine taking 250,000 pills for the next 50 years is going to do my liver any favours either!

Essential oil made from medicinal cannabis

What about Medicinal Cannabis?

Marijuana does have any proven side effects. THC binds to cannabinoid receptors, which are concentrated in areas of the brain associated with thinking, memory, pleasure, coordination and time perception. The effects of marijuana can interfere with attention, judgment and balance. Some studies have produced conflicting results on whether smoking marijuana carries a significant cancer risk but there’s nothing concrete. There is also conflicting evidence on whether long term use of Cannabis effects one’s mental health but again, nothing concrete. Scientists say that it may increase the risk of psychosis but, those studies seemed to focus on the use of Cannabis in teens and young adults recreationally, not medicinally. If someone has evidence to state otherwise, please do let me know so I can amend this.

There is a plethora of evidence that shows Medical Cannabis can be very beneficial for patients with chronic pain. Many of us would opt for Cannabis as it is diverse and doesn’t need to be smoked. It’s also natural so we could cut way back on the manufactured pain meds. Surely it would be much cheaper for the HSE to supply chronic pain patients (who have medical cards) with something that can be grown in abundance than to pay for trillions of pills each year?

Taken from Irish Health, ‘Long Waiting Times for Chronic Pain Patients’, Jan 2016

“Chronic pain affects around 13% of the Irish population, however those affected have to wait an average of two years before seeing a doctor specialising in this area. According to Dr Dominic Hegarty, a consultant in pain management at Cork University Hospital, chronic pain ‘presents a major challenge to the citizens and the economy of Europe’.

Most people affected experience their pain for more than two years and some are affected for 20 years or longer. Chronic pain patients make an average of seven visits to healthcare providers every year, with 22% making more than 10 visits.”

Imagine how these stats would change if medical cannabis was prescribed to chronic pain patients? If cannabis is as effective as the experts say for chronic pain patients, it could mean waiting times drastically reducing as many patients wouldn’t need to see as many specialists.

There is so many things wrong with our health system here in Ireland. Waiting times are abysmal across the board. Many of us finally get to see the specialists, get prescribed a cocktail of meds, exhaust all options for it not to work. The patients are loosing out. What does the Government have to loose by allowing those who have exhausted all options to try medicinal cannabis?

Let me leave you with this, dear Minister. People with chronic pain are three times more likely to develop psychiatric disorders according to Harvard University. So, not only are the Government and HSE footing the bill for pain treatment but for psychiatric treatment also. Three times more likely to develop conditions such as depression and anxiety, is it any wonder why there is such high rates of suicide amongst the chronic pain community?

Please think about the implications of excluding those of us with chronic pain. By allowing us to give medicinal cannabis a try, you’re potentially giving a piece of a person’s life back or saving one.

Sincerely,

A sufferer of chronic pain, a mother of two children with chronic pain disorders and of course, a citizen of Ireland.

 

 

 

 

Being Chronically Ill means..

Hey there, hi there, ho there!

Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.

In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.

Anyway,  I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.

Hope you enjoy my latest blog!

One day of fun=several days of a flare up.

You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.

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You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.

You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.

You have more sets of PJs than actual clothes.

You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?

Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?

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Your bed is your best friend and your enemy.

When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.

You often develop a less than desirable odour.

When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.

When you do get round to washing  yourself you feel somewhat human again. But then you have to go lie down.

If someone were to shake you, you’d probably rattle.

You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.

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A successful day for you is getting dressed and actually leaving the house.

Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!

You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.

Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.

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You have watched anything worth watching already.

Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.

Till next time,

Z.M

x

A Simple Guide to The Ehlers Danlos Syndromes

UPDATE: On March 15 2017, criteria and classifications of The Ehlers Danlos Syndromes were updated for the first time in 20 years. In light of this, I will update my guide (with the new information made available) to highlight new diagnostic criteria and classifications. You can read more about the changes here.

Because there are now 13 types of EDS, I have only covered Hypermobile Ehlers Danlos Syndrome (hEDS), Vascular Ehlers Danlos Syndrome (vEDS) and Classical Ehlers Danlos Syndrome (cEDS). If you would like me to do another guide to the rarer types, please comment below or email me. I would be more than happy to oblige!

“You’re suffering from Fibromyalgia!” “You’re depressed!” “You’re imagining it!”

“You’re malingering!” “You’re attention seeking!-”

“No I’m not – I have an Ehlers Danlos Syndrome!”

 The Ehlers Danlos Syndromes (EDS) are a group of conditions that are poorly understood, even by many in the medical professions. It is essentially a defect in the production of collagen, an essential component of connective tissue.

Many articles about EDS contain medical terminology that can be difficult to understand. The purpose of this guide is to put the medical terminology in plain language and help non-affected family and friends understand exactly how EDS affects people and their day-to-day lives. The medical terminology is included in italics. Links to web pages are included throughout the article if you want to conduct your own research.

Why are they called The Ehlers Danlos Syndromes (EDS)?

The name of the condition itself is quite a mouthful! Ehlers Danlos Syndrome (Eylerz-Dan loss Sin-drome) is named after the two physicians, Dr Ehlers and Dr Danlos, who first described this group of connective tissue disorders.

What is EDS?

People with a type of EDS will produce faulty collagen. Collagen is essential for healthy connective tissue, which is found throughout the body supporting and connecting the different types of tissues and organs, including tendons, ligaments, blood vessels, internal organs, bones, the blood and skin.

Imagine a healthy person’s connective tissue as being like regular household glue. People with EDS have collagen that is more like chewing gum; stretchy and not very good at keeping things in place.

What causes EDS?

There are a number of different genes responsible for making collagen and connective tissue, so there are different types of EDS depending on which genes are faulty. There are 13 types of The Ehlers Danlos Syndromes

How did I get a faulty gene?

It is possible that the faulty gene may have been inherited from one parent, or both parents, or not inherited at all. It may be that the defect has occurred in that person for the first time. This happens in 25% of cases.

 How I explained it to my 7-year old son.

A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly. I went on to explain that with proper exercise he could help to strengthen his muscles so that they acted like binding around the joints to help support them.

What does EDS feel like?

Having an EDS feels different from person to person, depending on their type, but many describe it as having a lifelong flu. Have you ever had the flu? Do you remember how painful it was having those aches and pains in the joints and muscles? Do you remember how tired and run down you felt? That’s what it’s like for people with EDS only worse and it never goes away. In addition to the daily aches and pains people with EDS also have to deal with very painful headaches, gut issues and then of course there’s the issue of dislocation. Many EDSers can’t go a day without a joint popping out. It can happen simply by stepping off a footpath or picking up a pot when cooking. A lot of people with EDS are also affected by the weather. When it is damp or when the air pressure changes their pain can increase.

How does EDS affect people?

Because collagen is everywhere in the body, there are hundreds of ways EDS can affect people. Any two people with EDS may have very different signs and symptoms, this includes people with the same type. In som,e the condition is quite mild. For others it can be disabling. Some of the rare severe types can be life-threatening.

One of the problems with diagnosing EDS is that many diseases share the same symptoms. As a result, EDS can be easily confused with other conditions and it may be difficult for doctors to recognise. But there are ways to tell if someone may be affected by EDS and need more thorough investigation. Some of the investigations available are listed later.

The most common symptoms of EDS (hEDS and cEDS) are:

  • “Double jointed” – Hypermobility: joints that are more flexible than normal.
  • Loose, unstable joints that dislocate easily.
  • Clicking joints.
  • Joint and muscle pain

In addition there may be

  • Fatigue (extreme tiredness).
  • Injuring easily.
  • Fragile skin that bruises and tears easily. The skin may also be stretchy.
  • Digestive problems
  • Dizziness and an increased heart rate after standing up. (Postural Orthostatic Tachycardia Syndrome or simply POTS for short)
  • Incontinence of urine in women

Digestion.

If food in the stomach doesn’t move through the body to make its way out it may just sits in the intestines and can cause a feeling of fullness, nausea, vomiting, stomach pain, to name just a few symptoms. This condition is known as Gastroparesis. (gas-tro par-eesis).

Nervous System

Another condition than often affects people with EDS is a fault with that part of the nervous system controlling the “automatic” functions of the body; things like blood pressure, breathing, heartbeat, digestion, how hot or cold you feel and the way your organs work and so on. This is called the Autonomic Nervous System. When it doesn’t operate as it should the conditions is called Dysautonomia (Dis-auto-no-me-a). Common symptoms of this are trouble with digestion, dizziness and fainting.

Dysautonomia affecting the heart.

The most common type of Dysautonomia causes dizziness and an increased heart rate after standing up. This condition is called Postural Orthostatic Tachycardia Syndrome or simply, POTS for short.

Some sufferers have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life things like bathing, housework, eating, sitting upright, walking or standing can be very difficult. They may feel dizzy or even faint from doing these things.

What are the symptoms for POTS?

People with POTS experience fatigue (extreme tiredness), headaches, lightheadedness (feeling dizzy), heart palpitations (when their heart beats so hard you can hear and feel it), exercise intolerance (feel ill when exercising), nausea (feeling sick), diminished concentration (hard to concentrate), tremulousness (shaking), syncope (fainting), coldness or pain in the arms, legs, fingers and toes, chest pain and shortness of breath. People with POTS can develop a reddish purple colour in the legs when standing; this is believed to be caused by blood falling down in the body because of weak veins. The colour change subsides upon returning to sitting or lying position.

Can you tell someone has EDS just by looking at them?

The short answer is no. Some may have typically blue sclera (whites of the eyes), they may have translucent skin (see through) and you may even notice how bendy they are. But some people may have some of these things and not have EDS.

Many people with the type of EDS that affects blood vessels (Vascular Ehlers Danlos Syndrome or simply, vEDS) do have some facial characteristics. Notice in the picture below that the people have big eyes, thin nose and lips.

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Can EDS kill people?

Some people think it can’t but actually, EDS has led to the untimely death of people all over the world. vEDS is considered the most serious form of EDS due to the possibility of the heart or organs tearing.

Many EDSers live a life of constant pain. This pain and misunderstanding from their medical teams, families and friends can make a person feel very sad and alone which can lead to depression and even suicide.

What treatments are available for people with EDS?

Because EDS is considered “rare” there are not many doctors willing to learn about it. Types such as hEDS and cEDS can be somewhat managed through specialised physiotherapy. Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations. Occupational therapy is also useful to help manage everyday life. Pain relief is very important for people with EDS.

EDSers should also be under the care of a Rheumatologist (a doctor who looks after bones and joints), a Cardiologist (heart doctor). There may also be a need for more specialised doctors such as Neurologists (doctors who look after the nervous system) or all of the above plus many, many more. Sometimes operations are required to repair joints that have dislocated frequently and haven’t healed properly.

Do all people with EDS need wheelchairs?

Not everyone will experience EDS the same way, some people can live normal lives and manage very well with physiotherapy and pain relief. Others may need to use wheelchairs or walking sticks to help them get around. Some people with EDS also have Gastroparesis which we discussed earlier and may need to be fed using a tube. Others may only have mild tummy problems. Some people with EDS may have to go to hospital a lot while some may only go to their GP every few months. But, just because one person can live their lives fairly normally, it doesn’t mean they don’t have EDS or that their pain shouldn’t be taken seriously.

Can you catch EDS, POTS or Gastroparesis?

No. EDS and other sub conditions are not contagious. If you know somebody with EDS, don’t be afraid, you’re not going to catch anything from them. So, if you’re avoiding someone with EDS, go make friends with them.

 How can I help someone with EDS?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has EDS and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about EDS and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about EDS. Experts believe that EDS is not rare, just rarely diagnosed.

I will update the Diagnostic Criteria for cEDS, hEDS and vEDS in the coming days.

*Special thanks to my Dad who helped me edit this guide.*

Do you think anything else about EDS needs to be explained? Let me know in the comments!

Z.M

x

 

Teaching our children about consent should start in early childhood

The topic of consent is everywhere at the moment, it is an important social issue that affects each and every person, male or female, no matter their age. While I welcome mandatory consent classes on college campuses, I can’t help but wonder whether we are leaving it too late to begin introducing the topic of consent to the young people of Ireland? Let’s face it; the majority of first year college students are already sexually active. Should these mandatory classes be apart of the secondary curriculum? Absolutely. But as parents I feel it is our responsibility to plant the seed much earlier on in life.

I recently watched Louise O’Neill’s documentary Asking for It? If you haven’t seen it yet, you can watch it here. After it’s airing, I began scrolling through comment sections on social media to suss out what the Irish public thought of rape culture and the issue of consent.

Sadly, I was unsurprised to see so many people claim that Ireland does not have a rape culture. People were either too fixated on the word “culture” or almost literally sticking their fingers in their ears and screaming to avoid dealing with this very real issue. It’s such an Irish thing to do, to sweep it under the carpet, no need to make anyone uncomfortable. We have a rich history of turning our backs on painful subjects. Just look at the Magdalene Laundry scandal, for instance. Modern day Ireland is repulsed with how women up until very recently were treated by the Church. We are also disgusted that as a society we kept quiet. This attitude reflects what we are seeing today with women being perceived within a Madonna-whore complex. No, “rape culture” does not mean that as a nation we condone rape. Not. At. All. Of course the vast majority of people believe that rape is a heinous crime and those who carry out such acts should be punished to the fullest extent. Consent is consent and using excuses means we will never tackle the real issue head on.

We have a tendency to victim blame, not just about rape but also in many other situations. Just look at Kim Kardashian’s ordeal in Paris, for example. The narrative wasn’t about this traumatic event a human being went through but rather, blaming Kim for showing off her very expensive jewellery on social media. That she was “asking for it to happen.” The same thing happens to victims of sexual assault.

“Well if she’s going out dressed like that…”

“She shouldn’t have walked home alone”.

“How much did she have to drink?”

“Sure wasn’t she mauling the face off him earlier on in the night? What did she expect?”

Excusing a man’s (or woman’s) actions because they were drunk and saying “he/she would never do that normally.”

Every time these words are uttered we undermine the actual issue.

Growing up in Ireland, I could not go with friends for a night out without the following lecture chanted at me like some sort of protection spell:

“Stay with the crowd, don’t wonder off alone. Watch your drink. If someone is buying you a drink, go to the bar with them.”

As a young teenage girl, I had never been exposed to rape. It was something I only knew about from obsessively watching Law and Order: SVU. It was something that happened in far away lands, not here in little ole Ireland. Then again, I did live a fairly sheltered life.

But, as I began going out more, I started to understand why my mother gave me the same speech over and over again, each and every single night out. Even today at 29, a mother of two children, I am still reminded by my mother to do all of those things. Years ago I would have rolled my eyes at mum followed by a “yeah, yeah, yeah. OK, Mum.” Now?  I make sure I don’t walk home alone on the rare night I do go out. Or if I can’t get someone to walk home with me, I call my husband for the 7-minute walk home. A lot can happen in 7 minutes.

I recently had a discussion with an older relative about rape culture and particularly, victim blaming. The conversation went something like this:

“Women have a level of responsibility to protect themselves,” the relative said.

In a perfect world, it would be great for women to feel comfortable enough to walk home alone at night. It has been drilled into our heads so much that we shouldn’t put ourselves in dangerous situations but how about we start telling young men before they go out to respect any girl they potentially hook up with. That no means no and not try a little harder to swoon her into submission.

Sexual abuse is rarely ever about sex, it’s about power. Assault can happen anytime, anywhere and the attacker more often than not is someone familiar to the victim. 93% of perpetrators are familiar to their victims.

I responded to this relative with a question.

“If a man is mugged in the street at night. Do you blame the man or the thugs that mugged him?”

This made my relative stop and think.

A few days later we went to the woods for a stroll and some foraging. We separated for a few minutes. I noticed a white van with no windows pull up near me. I looked around to see how many people were around me and checked the laces on my runners were tied properly. My male relative didn’t acknowledge the van, as in he didn’t think twice about it. Women all over the world are on edge. We always have our defenses up. Will that guy cat calling follow me home? Will I arrive home safely in this taxi?

When scrolling through the comments section under Jennifer Hough’s article about rape culture in Cork one comment stuck out for me.

It went something like this:

There have been no reports of rape over the weekend so I question the author’s claim that she saw this happening.

One in four Irish women have experienced sexual abuse at some point in their lives. One. In. Four. That’s almost as common as cancer and yet, why don’t we see it in the media more? Victims of assault fear the trauma of reliving their experience during an investigation or fear of being accused of leading the perpetrator on; that they did something to ask for the attack. According to the Rape Crisis Centre Network of Ireland’s (RCC) 2014 statistics 33% of survivors contacted the police about their assault. According to the Sexual Abuse and Violence in Ireland Report (SAVI), only one in ten sexual crimes are reported in Ireland. Of that one in ten, only 7% secures a conviction. Less than 1% of victims of sexual crime in Ireland get justice.

So, just because we don’t see it in the media everyday, it doesn’t it’s not happening.

Consent is a hot topic and Louise O’Neill’s documentary resulted in the subject being discussed everywhere-amongst friends, on social media and in the news. The end message is we need to teach young men about consent just as we teach women to protect themselves. We are now seeing mandatory classes in collages being taught about consent but should we wait until most young people are already sexually active before we introduce the idea of consent to them?

Just the other day my 7-year-old son was trying to get his 19-month-old sister to give him hugs and kisses. She was shouting no but my son kept trying. At that age of course there was no malice in his actions but something clicked. This is where it begins. I told my son there and then that if his sister didn’t want hugs and kisses and she is shouting no that it meant no and to stop. I want him to understand that now, not when he’s a teenage boy. No means no. We see it all the time, relatives practically forcing children to show them affection. Why are we so pushy for physical affection? Children are not property. We have no right to hit them so why should we force them to hug and kiss us? It is their body. It is their choice. Their feelings about their personal space matter as much as any adult’s.

It all starts in childhood. We need to teach our children that our bodies are our own and nobody, not our parents or siblings have a right to invade our personal space or have forced affection brought on them. Parents often tell their children to let them know if anyone touches them inappropriately. Abuse often starts with uninvited touching, hugging or stroking. If we force affection on a child who clearly doesn’t want it, it can be confusing for them to know when something is inappropriate. Forced affection doesn’t show children we love them, it shows them that we can do as we please with their bodies.

If you don’t believe the idea of consent should be introduced to children just take a look at the figures from the 2014 RCC report:

52% of survivors aged 13 to 17 were subjected to rape

15% of perpetrators were under 18

9% of survivors attending crisis centres in Ireland were children.

Waiting until our children become young adults to discuss consent is too late and the figures reflect this.

Although parents or relatives have no intention of harming a child, nor do they think they are doing anything inappropriate; we are teaching our children that an adult or other person’s want for physical affection is more important than their own comfort and safety. It starts as early as toddlerhood; we are laying the groundwork for behaviours that continue into adult life. Teaching our children that no means no could potentially save them from assault later in life. It could also empower young people to have sex only when they’re ready to.

We don’t see physical interaction amongst children as a problem until it’s too late. They tickle, they force hugs and rarely they mean any harm. But every parent has experienced an occasion where their child has either been subjected to touching they didn’t want or have been the ones to force the affection or tickles. So how can we introduce consent to children without going into too much detail about sexual abuse?

We need to teach our children to ask for permission to touch another person. “Is it okay if I hug you? Or “Can I have a hug?”

This teaches our children to ask for permission and it also teaches them to think about their actions before they do them.

We need to teach our children that consent can be taken away too.

Adults know all too well, especially parents that we have days where we feel “touched out.” Kids have those days too. They may have been very affectionate and willing to accept affection the day before but they are well in their rights to tell someone that they don’t want to be touched today. This maybe confusing for other children so it is vital that we show them that it’s OK to change your mind.

A child should never be forced to show affection to another person.

It is a common occurrence that children are told, “go give Nana a hug” or “give Aunty a kiss”. Children are eager to please so they may oblige but that shouldn’t be the case. No matter how familiar your child is with someone, he/she should feel comfortable enough to say no. Given that 93% of cases involve a person the victim is familiar with, it is important that we validate our children’s feelings and respect their decision. Under no circumstances should you guilt a child into giving you affection. Don’t pretend to cry or be sad. So many of us are guilty of this. I know my husband and I have been guilty of this. Humans need touch, we are social creatures but it isn’t really affection if you force or guilt a child into it is it?

Not saying no doesn’t mean yes.

As discussed, children are eager to please so they may do something they don’t really want to do to please a friend, teacher or family member. You may think your own child has no problem saying no but they may not be so forthcoming with someone other than you. Our children must also learn just because they don’t hear a resounding no that it means they can go ahead with that hug or kiss.

Practice what you preach.

Lead by example. Children imitate what they see in their day-to-day lives. If they see Daddy (or Mommy) force affection on to one another, the idea that it’s OK to do that is solidified. Many couples will force a hug or a kiss a form of tomfoolery and no there is no ill intent but still, it is important for us to show our children that we should respect everyone’s boundaries.

Further reading and helplines:

Click to access RCNI-National-Stats-2014.pdf

Rape Crisis Centre helpline:

1800 778888

or see the website www.rapecrisishelp.ie.

Until next time,

Z.M.

 

11 Crazy Things People With EDS Have Heard

I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.

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1. You have EDS because you’re vaccine injured.

No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.

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2. You have EDS because you’re possessed.

Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?

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3. You obviously have Lyme disease. That triggered your EDS.

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Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.

4. You have EDS because you’re stressed.

I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.

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5. You’re husband is a lucky guy.

*insert pervy wink here* Shockingly, this came from a Doctor!

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This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.

6.You’re sick because you’re in a bad relationship

This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.

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I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.

7. You’re too young to be sick

Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?

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I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.

8. You’re too short to have EDS

I think you’re confusing my condition with Marfan Syndrome.

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9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.

Well, that’s just creepy.

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Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.

10. Your son has EDS because you’re a bad parent.

Like, what the actual F?

The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!

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11. Someone assumed because I was in a wheelchair that I was mentally affected.

I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”

 I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.

What do you do in a situation like that? Laugh? Cry? Both?

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Has any thing like this happened to you? Let me know in the comments!

Share this with your friends and family to help educate them.

Until next time,

ZM

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You know you’re breastfeeding a toddler when..

It’s National Breastfeeding Week! I love this time of year because my Facebook timeline is filled with beautiful pictures of children having milky cuddles with their mummies. Of course this week also means there will be heated debates under articles, such as this one. This week is not about debate though, it’s about celebrating and promoting breastfeeding. And boy, do we need to promote the sugar out of breastfeeding. In Ireland just 1-2% of one year olds are breastfed. The low breastfeeding rates is costing our Government approximately 800 million Euro each year. The HSE and World Health Organisation recommends all infants are exclusively breastfed and then fed along with solids until at least two years old.

Breastfeeding a toddler is so much fun! Nursing can be challenging at times but things change once your little baby becomes a toddler, breastmilk is no longer just about nutrition but immunity, comfort and so, so much more. Scientific studies show that the natural weaning age is anywhere from 4-7 years of age. The average weaning age world wide is 4 years old.

You know you’re breastfeeding a toddler when..

1. Your child finds new and interesting positions to nurse in. 

Before now, you had your go to position, whether it was laid back or a rugby hold, you had that position down. Long gone are the days when you felt so awkward, perfecting the latch and then meeting your baby’s eyes with a loving gaze.

Now? Feet in your face, feet in your mouth, feet in their mouth. Nursing has become a yoga extravaganza. You wonder to yourself “HOW THE HELL CAN YOU BEND LIKE THAT?!” In breastfeeding circles we call this act ‘Gymnurstics’. If only it was an Olympic sport.

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2. Your child thanks you.

Especially when you don’t ever expect them to. The fact that they know it’s something they love and appreciate, innately astounds you.

3. You feel less like a mum and more like a buffet table.

With child hopping from “dis side” to “dis side” every ten seconds, you start to wonder if your boobs provide different flavours! Chocolate and vanilla perhaps?

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4.You’re nursing two toddlers and

They argue about who is getting which boob and agree on a compromise.

5. You post this infographic every time someone says there are no benefits to breastmilk after 12 months:

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or this one

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It’s actually crazy how many health care professionals tell mothers that nursing passed 12 months is only for them and there are no benefits to the child. As you can tell from the graphics above, there is an abundance of benefits in full term nursing. There is also amazing benefits for mom too. Check it them out below:

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6. Your toddler has their own word for your milk.

My little girl asks for “boob” at 17 months but I have heard the cutest ways toddlers ask for milk like “bainne”, “mama milk” and”milkies”, to name just a few.

7. Nipple twiddling becomes a game.

No matter how many people think it’s “weird”, “gross” or “wrong”, there is a biological purpose for nipple twiddling. Children twiddle nipples or slap mother’s breasts to stimulate the let down of the milk. However, many toddlers turn this into a game by seeing just how far mommy’s nipples can stretch out. It’s hilarious until you realise you haven’t trimmed their nails in awhile or you get sprayed in the face with your own milk. Hey, at least you’ll have some awesome skin!

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8. You’re so amused when people find out you’re still nursing and they recoil in horror.

It’s very amusing to hear people criticise “extended” breastfeeding, especially when their own toddlers are sitting across the way from you with a dummy or bottle in their mouths. We are the only mammals that don’t let their young self wean and we are the only mammals that drink the milk of other species. It’s ironic really that mothers of breastfeeding toddlers are criticised yet full grown adults drink the growth fluid of calfs. Many people are under the impression that breastfed toddlers and older children are only being fed breastmilk. While yes, it is an amazing source of nutrition, children over a year do need to have a healthy diet of solid food in addition to their mummy’s milk. A lot of people also believe (without any basis for their thoughts) that breastfed toddlers will be “clingy” and will have psychological problems when they’re older. This is not the case at all. Studies show that breastfed children are protected against mental health problems and addictions.They tend to be higher in intelligence and more emotionally secure than children who were not breastfed.

Following on from that

9. When you’re asked how long you’re going to continue to nurse for.

When somebody is being rude asking me that question, I’ll usually answer with something sarcastic like “We will probably wrap it up when she starts college.” For anyone who is genuinely asking I tell them that we will stop when we are both ready. It’s a two way relationship. Feeding a toddler makes life so much easier. I’m not sure how we would deal with tantrums and illness without breastfeeding. It really is the answer to so many problems.

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10. When they learn how to unclip your bra and help themselves.

This aspect of feeding a toddler is simply brilliant, especially at night. If you’re cosleeping and breastfeeding your child will eventually learn how to get your top open/up and latch on while you’re still sleeping. Studies show that mothers who breastfeed and co sleep get more sleep than mothers who don’t. Who doesn’t love extra sleep?

11. Your toddler feeds their dolls/teddies/toy trains and even cats.

There is nothing sweeter than seeing your toddler pretending to be mommy and lifting their top to nourish their baby dolls. It’s amazing to see natural instincts kick in when their babies are “crying”. My own daughter recently chased the cat around the house with her top up screaming “nummy nummy num”.

If your toddler isn’t feeding their toy, they’re getting you to feed them. Lying down with your toddler latched on one boob and some inanimate object resting on the other.

12. Your toddler learns that other people have nipples too.

Recently my daughter realised Daddy had nipples too. She stared at them for a few minutes. Daddy and I waited to see what would happen. Of course I was trying to convince her that Daddy has milk too while he was trying to tell her he didn’t. After a couple of minutes, she opened her mouth (very reluctantly) and went for a taste. She was immediately put off my the hair that surrounds Daddy’s nipples.

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and finally

13. Your toddler and your husband have a lot in common.

The sight of bare boobies makes your toddler giggle, squeal and clap. Motor boating is also a favourite past time.

A final word..

Feeding a toddler brings so much joy but quite often comments made on social media or from friends and family can be really off putting. Women are called pedophiles and weirdos just for simply following their biological instincts and doing what is best for them and their child. It’s a sad reality that breasts are used to sell everything from cars to food but should a woman use them for their biological purpose, they are abused. Breastfeeding is in no way sexual and anyone who thinks so should take a class in Biology. Would you scoff at a dog feeding her 8 week old puppies? In human years, that would equal to a toddler. Even cows, when left alone will feed from their mothers for up to four years. We don’t respect our mammalian instincts anymore.

We rarely see full term breastfeeding in our everyday lives. Where we see it most is in films or TV shows and the characters are usually portrayed as really radical hippies or weirdos. Take Game of Thrones, for example.  The feeding of a 10 year old is pretty unrealistic. Children loose the ability to correctly latch at around aged 7. Ever wondered why they are called milk teeth? When a child looses their milk teeth, this is right about the age where they would naturally wean. Hence the natural weaning age is between 4 and 7. Portraying full term breastfeeding in a negative way does nothing but hinder the acceptance or normalisation of the act.

It is really only in the West that we have such a problem with breastfeeding.

“In Mongolia, there’s an oft-quoted saying that the best wrestlers are breastfed for at least six years – a serious endorsement in a country where wrestling is the national sport.”Read more about this here.

There is no reason you need to stop feeding your baby once they hit 12 months, unless you want to. If it feels right for you and your baby, go for it and feck the begrudgers.

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Our medical trip to London. Part 1

So, I’m sitting on a plane at Heathrow airport. As I stare out the window and listen to the rumblings of the engines preparing to take us back home, I reflect on the last few days.

I have been running on adrenaline, will power and strong cups of coffee to let my family enjoy the experience of everything London has to offer. I know they wouldn’t have gone sight seeing if they knew just how unwell I was. I can’t hide it now though. My pelvis has separated, which it does every few days or with exertion. My wrist popped out and is now painfully bruised. I am emotionally and physically drained.

We arrived in London on Tuesday evening. Weary after our drive from Cork to Dublin, I was looking forward to getting to our hotel in the Premier Inn Earl’s Court and hopping into the bath for a soak. Ollie Pops N’Clicks had other plans..

In addition to inheriting all my wonderful genetic gifts, she also inherited my inability to travel without some form of sickness cropping up. Yup. Right there on the packed tube, close to me in the sling she vomited. And I mean vomited. Like ‘Team America’ vomited. It just kept coming! How could someone so little bring up that much puke?

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The smell. Christ. Just what I needed. I look over at my husband only to see him laughing. Then everybody else in the tube noticed what happened and began to laugh too. Frickin’ hilarious, lads.

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We hopped off the tube so I could clean myself up as much as possible. We eventually made it to the hotel in one piece, just. Ravenous, we dropped off our bags, got washed up and went to the restaurant for a pleasant dinner.

I didn’t sleep so well that night. The next afternoon Bendy Boy and I would be meeting the Professor Grahame. I met him once at a conference in Cork. He was just as sweet and gentle as I had remembered. The Professor knows all too well the struggle Irish zebras face, almost total abandonment from our own Government and healthcare system. No specialists and the majority of tests needed are simply unavailable. We don’t even have an upright MRI machine.

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After an examination and a very long chat, the Professor confirmed Bendy Boy’s diagnosis of EDS Hypermobility Type. It was also noted that the six year old shows signs of Postural Orthostatic Tachycardia Syndrome. When Bendy Boy stands up, his heart rate rises and his feet pool with blood. I was shocked to learn of the POTS signs as he has never complained of feeling dizzy except when he gets out of the bath. I was surprised I didn’t notice the pooling.

The Professor seemed impressed with my knowledge and understanding of medical terminology. When there are no experts available to you, you have to become your own expert.

Here is an excerpt from my own medical report:

“On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale her shoulders and hips (borderline) are also hypermobile, as are her feet which flatten and pronate on weight bearing. There is a non-significant 2° scoliosis on the Bunnell scoliometer, but no other features of a marfanoid habitus. Her skin is soft and silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are numerous thin scars from knee scrapes acquired in childhood and similar over her elbows. Striae atrophicae were first noted by her at the age of 18, and she has minimal striae gravidarum despite having had two full-term pregnancies, a pointer to EDS. Gorlin sign, ability to touch the nose with the tip of the tongue is positive, and the lingual frenulum is rudimentary, both pointers to EDS. She scored very highly (25/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. Her blood pressure lying was 124/84, pulse rate 66; standing 124/84, pulse rate 80. This rise of 14bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS. The evident pooling of blood in her toes on standing is further evidence in favour of PoTS.

On the basis of the clinical findings I have formed the conclusion that Yvonne is suffering from a heritable disorder of connective tissue, the Ehlers-Danlos syndrome hypermobility type, a diagnosis that was established by Dr Mulcahy in 2013. I explained the nature of the condition to her, in particular its genetic basis and the vulnerability it confers on soft tissues to the effects of injury and overuse. In her case it has resulted in longstanding widespread joint and spinal pain. Since the time of her first pregnancy she has suffered a secondary chronic pain syndrome, a frequent occurrence in this situation. It is likely that her bowel symptoms represent an EDS-related intestinal dysmotility, and almost certainly she has PoTS.

There is a concern about the possibility that she might have craniocervical instability on the basis of left-sided weakness, headaches, and paraesthesia in her arms and legs. In addition she feels that her head feels too heavy for her neck. With this array of suggestive symptoms I have agreed that we should proceed to an upright MRI examination, and I will be requesting this at the Medserena Upright MRI Unit for her to have one on a future visit.”

And Bendy Boy’s report:

On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale his shoulders, cervical spine, hips, fingers and big toes are all hypermobile, as are his feet which flatten and pronate on weight bearing. There is a non-significant 3° scoliosis on the Bunnell scoliometer. Other features of a marfanoid habitus include a pectus excavatum, and hand-height and foot-height ratios both elevated to within the marfanoid range. I interpret these findings as indicating an incomplete marfanoid habitus, which may become more obvious as he completes his adolescent growth spurt. This should not be taken to imply that I feel he has the Marfan syndrome as the habitus is widely distributed throughout the family of heritable disorders of connective tissue. His skin is characteristically soft, silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are no paper-thin scars of note. Gorlin sign, ability to touch the nose with the tip of the tongue, is negative. The lingual frenulum is present (normal). He scored moderately highly (12/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. His blood pressure lying was 96/53, pulse rate 75; standing 102/62, pulse rate 85. This rise of 10bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS.

On the basis of the clinical findings I confirm that Alexander shares his mother’s phenotype and diagnosis.”

While I was being examined, Ollie Pop (16 months) decided to stand up on her own for the first time!  And I missed it. Thank You, EDS!

Receiving the confirmation of EDS HT and the noted symptoms of POTS given by Professor Grahame will hopefully bear weight in accessing services here in Ireland. Although, I won’t hold my breath. My GP was happy to hear that I took the plunge going to the UK and she’s very interested in my case. It took a long time to find a GP that genuinely cares. While a weight has been lifted knowing that I definitely have EDS and haven’t been misdiagnosed for the hundredth time, there is a fear. The idea of having cervical instability or Chiari freaks the sugar out of me. This last trip cost roughly 5,000 Euro. The next trip will be double that again. If Chiari is present and significant it may mean I will have to take a trip to the US to have surgery. We will just have to wait and see.

Coming home to Ireland, it is wet and windy. It’s miserable. The weather here reflects how I feel about Ireland and it’s healthcare system.

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Now that I’m home I don’t have access to the fantastic services and more importantly the compassion I felt in London. I felt so at ease.

I am fundraising to get back to the UK in the new year for further testing. I will give details of these in Part 2 along with the rest of my tale. If you can donate anything at all, just click on the link below. Even sharing our story would be a massive help.

https://www.gofundme.com/2befu24c

So, until next time,

ZM.

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Household Gadgets for Spoonies-Part 1

What’s a “spoonie”? A spoonie is a person who suffers from a Chronic Illness. It is derived from Spoon Theory. When you are ill every. single. day, you need to decide what’s important. Do I shower or clean the bathroom? Although it might be a no brainer that you obviously choose the shower, for many of us, we have to forgo the shower otherwise the house will look something like this:

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Laundry-

When it comes to actually doing the laundry, it can actually be quite tough on the body with all the bending down to grab clothes out of the machine and reaching up to hang them on the washing line. To stop me bending down so much I bought a laundry basket with folding legs. I also bought a device that helps me fold clothes beautifully. I suffer from DCD like symptoms as does my son due to our EDS.

Top tip: Mountains of clothes stacked on chairs around the house? Everytime you do a load of laundry check the sizes, condition and try to remember the last time you wore it. Is it too big or too small? Put it in a bag to pass along to a friend or charity shop. Does it have holes in it? In all honesty, are you going to repair it? Bin it. Have you worn it in the last 6-12 months? If the answer is no, put it in the pass along pile. This will save you doing “the big clear out”.

Cleaning-

This is something everybody hates doing so can you imagine what it’s like for someone who may end up in bed for a week by doing simple cleaning tasks?

Hoovering and mopping the floors is a massive task for spoonies and can often lead to injury. Lugging around hoovers and buckets of water for the mop can often mean I dislocate or pull something. Hence why I don’t do the floors often! We did invest in a steam mop that can also be used to clean surfaces. I do the find the X5 to be a bit heavy so if anyone knows of a lighter model, let me know in the comments! What I particularly like about the steam mop is that you can clean without the use of chemicals.

I haven’t bought one yet but I’m dying to get a cordless hoover from Dyson or a one of those rob hoover/mops. Other spoonies have recommended them to me. Come on, how awesome is this?!

 

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Top tip: Fill one of these guys with 1 part dish soap and 1 part white vinegar. Keep it in the shower and wash down surfaces before you get out of the shower or while you are conditioning your hair. Simples!

If your shower or bath has mould growing around the rubber edges you can soak some cotton pads in bleach and place it on the mouldy areas. Leave them there for a few hours and then wipe clean. The rubber areas will be white again!

Tidying up-

If you have kids and are chronically ill, keeping the house tidy can be a full time job. We live in a two storey house which makes things that bit more difficult. Recently, I bought two little blue baskets. When I am tidying up I go to each room and put things in the basket that don’t belong in that room. Then, as I go from room to room I put the things where they belong. If you have visitors coming around and you need to tidy quickly-just fill up the baskets and leave them to sort later.

Top tip: This one is particularly handy for the little ones. Buy a timer. Each day set it for 5 or 10 minutes-whatever you can manage and for those few minutes do a little cleaning or tidying. It’s amazing what you can get done in such a small amount of time!

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Some other gadgets for cleaning and tidying:

 

Messy in the kitchen? Invest in some stove top protectors 

Dog hair everywhere? Dyson have an attachment you can use to hoover your pet

Slipper mops allow you to clean the floors while you walk to the fridge-or to bed.

A keyboard with storage is handy for extra wires, notes and pens.

I hope some of these tips have been helpful to you. Have any tips/gadgets you want to share? Hit me up in the comments and I’ll add them to Part 2.

Till next time,

Z.M

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Common Breastfeeding Myths Debunked

There has been a lot of misinformation spread around lately in the press regarding breastfeeding. Unfortunately, celebrities have a lot of influence over society and those influences can be pretty detrimental to people’s health. Don’t believe me? Just look at the role former Playboy bunny, Jenny McCarthy had in the “anti vaxx” movement. This woman, with zero qualifications in anything, managed to convince millions of people that vaccines were responsible for autism. Even though Dr Wakefield, the man who was responsible for these falsified reports had his license revoked. There are still millions of people across the world that believe vaccines give children autism. Even though scientific studies are now showing that the condition is in fact, a consequence of genetics. So when celebrities such as Amanda Brunker spread false information like “watery breast milk”, what she is doing, whether she means to or not, is solidifying the doubt in some woman’s mind that she may not actually be “good enough.” Women are generally so hard on themselves and unsurprisingly really, with magazines and products telling them they are not enough, that they need to change themselves beyond recognition. We are a culture obsessed with having it all and being it all.

Celebrities have a huge responsibility when they speak in public. They should be informed on the subject matter they are talking about. Amanda’s recent column just goes to show women are not educated about breastfeeding at all. We all hear the “breast is best” mantra but what the majority of people don’t know is that breast is just the biological norm, it doesn’t have this long list of advantages, it’s just that formula has it’s disadvantages. We are barely educated about infant feeding, never mind feeding past infancy. It’s funny, if you want to get married you have to jump through so many hoops, like doing a pre marriage course but, when it comes to children we have a very “ah sure it’ll be grand” sort of attitude. In some respects, it is best to have a laid back attitude but, all choices regarding our children, especially when it comes to their health, should be evidence based and researched. And by researched I mean using official sites such as who.int, not some “truth” website.

If people did go and actually educate themselves about breastfeeding and breastfeeding past infancy, they would learn that in the second year of life 448mls of breast milk contains:

29% of energy requirements

43% of protein requirements

36% of calcium requirements

75% of vitamin A requirements

76% of folate requirements

94% of B12 requirements

60% of vitamin C requirements

Of course the longer a mother breastfeeds, the more protection she builds against illnesses such as breast and ovarian cancer. In fact, feeding for three years or more can reduce your chances of developing breast cancer by 94% That is huge! Yet society begrudges the women who do feed beyond the year mark-some even believe a child should be weaned earlier.

It was recently reported in the Irish Times that our low breastfeeding rate is costing the state €800 million a year. Nestlé recently announced they made a profit of nearly €80 million from Ireland alone in 2014. Formula is big business. Many I’m sure would be shocked to know that just €100,000 is spent promoting breastfeeding while maternity hospitals such as CUMH and UHL spend between €30,000 to €40,000 of tax payer’s money on formula every year, and that’s excluding the teats. So why do we have such poor breastfeeding rates?

If you ask me, and yes I know, nobody has, it’s because of misinformation. Pure and simple. So, with that in mind, I spoke with two experts about some of the most common myths surrounding breastfeeding.

Jack Newman, MD is a Canadian physician specialising in breastfeeding support and advocacy. He is also the co-author of ‘Dr Jack Newman’s Guide to Breast Feeding.’

Jack and baby

Based in Cork, Midwife and Breastfeeding Consultant Clare Boyle has been working in Ireland for the past 10 years. Clare teaches antenatal classes, breastfeeding preparation classes and provides breastfeeding support. See breastfeedingconsultant.ie for more information.

clare-new

Myth: Many women cannot physically breast feed or don’t produce enough breast milk.    

Dr Newman: This is not true.   There are a very few women who truly cannot produce all the milk the baby needs, but that doesn’t mean they cannot breastfeed.  They can supplement the baby at the breast with a lactation aid. In the vast majority of cases, mothers could have produced enough milk, but poor advice and poor ‘help’ undermined their breastfeeding.

Myth: Breastfeeding is supposed to hurt.  

Clare Boyle: Breastfeeding is actually meant to be a pleasure and joy to do and pain is not normal. Think of it from a biological point of view; would our foremothers continued with breastfeeding if was painful and difficult to do continue?   No, they would have given up and we, as a species, wouldn’t be here!   When a baby is latched on correctly there should be nothing more than a gentle tugging sensation and then the hormones we produce with breastfeeding – oxytocin, prolactin and endorphins – all help the mum bond and fall in love with her baby making it a pleasure and joy to do.

Myth: You can’t take medicines and breastfeed.  

Dr Newman: There is almost no drug that requires a mother to interrupt breastfeeding.   The real question is which is safer for the baby: Breastfeeding with tiny amounts of drug in the milk (and it is almost always tiny) or formula?   Clearly, in the majority of cases it is safer for the baby to breastfeed.

Myth: You can’t work and continue to breastfeed.  

Clare Boyle: I routinely help mums at around the six-month stage to co-ordinate breastfeeding and work requirements.   It takes a little organisation and planning but in the vast majority of cases, it can be done quite straightforwardly and it is lovely for both of you to connect through breastfeeding after being separated for the day.

Myth: You can’t drink alcohol and breastfeed.  

Dr Newman: The amount of alcohol that gets into the milk is tiny.   If you have 0.05 per cent alcohol in your blood, your milk will contain 0.05 per cent alcohol.   A baby could drink this all day and all night and not be harmed.

Myth: You can’t breastfeed a baby with disabilities such as Down Syndrome.  

Clare Boyle: Any baby with a disability can benefit hugely from breastfeeding.   The act of breastfeeding can help with neurological development and can help the baby mature and reach their full potential.

Myth: Premature babies must be ‘topped up’ with formula.  

Dr Newman: The majority of premature babies are not tiny, but born at 32 or more weeks gestation.   If the mother gets the help she needs for such a baby, there is no reason the baby cannot breastfeed exclusively.   For the very small premature babies, they can get to exclusive breastfeeding, again with good help, which unfortunately is rarely available in countries outside of Scandinavia.

Myth: It is easier to formula feed than it is to breastfeed.  

Clare Boyle: Breastfeeding is a learned skill, for most women it takes about two to four weeks to get the hang of it.   Feeling a bit overwhelmed and stressed about it in the early days is completely normal.   Once a mum has mastered breastfeeding, it just gets easier and easier.   It is important to remember that you will be feeding your child for many years to come and with breastfeeding it will never ever be so easy to feed your child the best food there is. There is no shopping, no sterilising, no mixing, and no cleaning up. Just pop baby on anywhere, anytime.

Myth: Formula is just as good as breast milk.  

Dr Newman: Not according to thousands of studies.   In fact, breast milk is so different from formula; you cannot consider them even similar, except that both are white.   Breast milk contains dozens of immune factors, not just antibodies, growth factors that help the brain, the gut, the immune system, the hematological system to develop stem cells, none of which are present in formula.   Human beings are very adaptable, that’s why many babies do OK on formula.   But they don’t, as a group, do as well as breastfed babies.

Myth: It is selfish to breastfeed because Dad can’t bond with baby.  

Dr Newman: This is the formula company line.  Every ‘information’ brochure I have seen that comes from a formula company mentions giving ‘dad a chance to feed the baby’. They know that bottles interfere with breastfeeding and that one bottle often becomes two bottles and then three and then the mother can’t keep up with pumping and so they end up giving formula and then eventually the baby stops breastfeeding.  But who said that feeding the baby is the only way a father can bond with his baby? Most mothers would be extremely grateful if the father helped out in other ways.  Walking, talking, holding the baby, changing the baby’s diaper, singing to the baby, bathing the baby.

Myth: Feeding a child past infancy is weird and unnecessary.

Dr Newman: The reason breastfeeding beyond infancy is “unsettling” is that many people, even health professionals who should know better, think it is and thus mothers are shamed because they are breastfeeding toddlers, they are told they are causing their children harm, and this without any basis in fact.  The WHO/UNICEF state, as do paediatric societies in most countries of the world, that baby should be exclusively breastfed for 6 months and then breastfeeding should continue to two years and beyond.  There is no distinction made for “advanced countries” and “less advanced countries”.Furthermore, one reason that breastfeeding a toddler is consider unnecessary is that people look only at the nutritional aspects of breast milk.  Sure, if a child is a wide variety of foods in ample amounts, does he need the protein from breast milk?  No.  But breast milk is more than just protein, fat and carbohydrate.  Breast milk is also immunity, and that continues as long as the child is breastfeeding.  We have good evidence that children in daycare, for example, who are breastfed are much less frequently affected by the epidemics of infectious diseases that sweep through daycare and if the breastfed infant or child does get sick, s/he is usually much less severely ill than their mates who are not breastfed.  In addition, breast milk contains growth factors that stimulate the development of the brain, the gut, the immune system itself.  Indeed, every system of the body.And finally, breastfeeding is much more than breast milk.  Breastfeeding is a relationship, a close, intimate relationship between two people who are usually in love with each other.  We should all have been so lucky as to have had such a relationship.

So there you have it, straight from the experts.

Till next time,

ZM