Category Archives: health

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.

https://www.youtube.com/watch?v=Mn0-bchY5aA

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

x

 

Famous, fabulous and flexible

 

Exploring the world of hypermobile celebs.

Cherylee Houston

Corrie’s Cheryl Houston is probably one of the most famous people who suffers from Hypermobility Ehlers Danlos Syndrome. Cherylee has done fantastic work raising awareness about the condition through EDS UK. She is Coronation Street’s first full time disabled actress.

National Television Awards, The O2, London, Britain - 22 Jan 2014
Mandatory Credit: Photo by David Fisher/REX Shutterstock (3525294ld) Cherylee Houston National Television Awards, The O2, London, Britain – 22 Jan 2014

 

Gary Turner

Gary ‘Stretch’ Turner can stretch the skin of his stomach to a distended length of 15.8cm or 6.25in due to Ehlers-Danlos Syndrome.

He is even in the new book of Guinness World Records!

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guinness world records best bodies Garry Turner skin guinnessworldrecords.com https://www.facebook.com/GuinnessWorldRecords/timeline

Mylene Klass

UK Singer Myleene often shows off her hyper mobile elbows. She can even play the piano backwards!

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Kelly Osbourne

Various articles state that Kelly suffers from hypermobile hips that frequently pop in and out. Reports even suggest that the fashionista’s hips pop out unexpectedly causing her to fall over. During her stint in Dancing with the Stars she said: ”I’m double-jointed everywhere, I think that’s why I’m so accident prone. Tight jeans and high heels equals one of my hips popping out and my face on the floor. As a result of this curse, I can fall perfectly. I turn it into a dance move.” (Xposé.ie)

Ouch! By the sounds of it, Kelly suffers from a hypermobility syndrome.

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Shakira

The pint sized Columbian singer isn’t shy about showing off her tricks. She can pull her legs over her head which “really freaks people out”.

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A Few Honourable Mentions

It is believed although not proven that historical figures such as Abraham Lincoln and Anne Frank suffered from connective tissue disorder,Marfan Syndrome.

Abraham Lincoln was 6″4. The president’s lanky build, his long, thin face, and his enormous hands and feet, sparked the notion that Lincoln might have had Marfan Syndrome. Geneticists and historians have debated this idea since it was first proposed in the early 1960s.

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Anne Frank, the famous German diarist who hid in her attic during World War II is believed to have suffered from Ehlers Danlos or some other Connective Tissue Disorder such as Marfan Syndrome. When talking about P.E in her diary, she says:

I’m not allowed to take part because my shoulders and hips tend to get dislocated.

Anne’s facial features also suggested she may have suffered from EDS. Her large eyes, thin nose and lips are common features in EDS sufferers.

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There is a wide belief amongst medical professionals that both Elizabeth Taylor and The King of Pop, Michael Jackson both had EDS.

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Note how bendy the actress’ elbows are.

Dr Diana Driscoll explains in the video below the reasons she believes Liz Taylor had EDS.

Interestingly, Michael and Elizabeth were friends. It is known that Michael suffered from chronic pain and insomnia, both of which are common symptoms of EDS. In addition to his hypermobility, it is possible to assume the late singer battled with the syndrome. Watch below from 16:40. Professor Rodney Grahame, one of world’s leading expert explains why he believes Jackson had Ehlers Danlos Syndrome.

While we have mentioned syndromes such as Marfan and EDS, it is important to note that 10% of the population are hypermobile and will not suffer from pain or complications. Many people with hypermobility live perfectly normal lives, some even use their bendiness to their advantage by taking part in Ballet and Gymnastics.

Have you spotted any bendy celebs? Hit comment and let me know!

Until next time,

Z.M

 

 

 

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.

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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

 

22 thoughts I had about my cervical check

January is Cervical Cancer Awareness Month. According to Cervical Check, during the 2013/2014 period, over 25,000 Irish women had a low-grade abnormality detected and over 5,421 women had a high-grade abnormality. Fifty-nine women were diagnosed with cervical cancer.

 I received a letter from Cervical Check after my daughter was born to remind me I was due a smear test. Here are a few of the thoughts I had during the whole process.

1.I can’t do this; I just had a tooth out. That’s enough invasiveness for one week I think. Yes. I’ll reschedule.

2.It’s been 8 years; I really need to do this. I’ve read so many stories about young women getting cervical cancer and wishing they had gone for their smears earlier. God, I really shouldn’t have let this go for so long.

3. Shower! Bad enough the nurse has to do this at all. Least I can do is shower.

4.Right. I’m here. Let’s get this done.

5. Maybe I should have tidied up? Nah, surely she won’t give two hoots. I’m not quite “70s chic,” just yet.

6.Why did I have to wear skinny jeans and Doc Martens? These are so awkward to get out of.

7. Goosebumps on my bum, how attractive. Bad enough this white derrière hasn’t seen a day of sunlight in years but, now it’s all chicken like.

8.This must be the worst part of this nurse’s job. How are all gynecologists not celibate? Would you not be sick of looking at it?

9.Oh that clamp thingy. We meet again. Yes, I remember you. I will accommodate you but only because it’s for my benefit.

10. No amount of lube is going to make this comfortable, lady. Went in without any issue though! Guess that was enough lube.

11. F**k! That’s cold. I didn’t remember how cold it was. Jaysus.

12.This hurts. Quite a lot. Maybe I still have that erosion on my cervix from when I was pregnant? What does that even mean? They never really explained that well at the hospital.

13. Make appointment with female GP about this. Surely it shouldn’t hurt this much.

14.Discharge? Yes. Isn’t that normal? Doesn’t everyone get that?

15. Phew, it’s out. Thank God for that. Don’t have to do that for another three years.

16. How long of a wait?! They are still sending them to America? We really need more resources here.

17. No, my period hasn’t returned. Go breastfeeding!

18. I wonder will that affect the results? Must Google that later.

19. I won’t leave it so long next time. God. That was quite stupid of me, leaving it this long. I would be killing my friends if they left it this long.

20. I wonder when my husband will start getting prostate checks? LOL-in my head. So. LOLIMH? I don’t know.

21. That wasn’t so bad after all. The dentist was so much worse. I feel like I should treat myself now. What’s an appropriate reward for a smear test? New knickers? Cake? Mmmmm cake

22.I’m hungry now. I wonder what’s there to eat at home.

For more information about smear tests, see www.cervicalcheck.ie

Me, the Zebra

Burchell's zebra (Equus quagga burchellii) smiling, Tanzania
Burchell’s zebra (Equus quagga burchellii) smiling, Tanzania

I was asked to start a blog by a few fellow zebras to share my experiences of being a mom with a chronic illness. Well, here I am. Before I get into all that though, it is important that you know my backstory, how I got to this point. I’m sure many of you can relate to my story, my journey to diagnosis.

In 2012, I was interning at the Cork Independent newspaper. During my time there I happened to take a liking to writing the health section of the paper. My parents were both nurses and my sister, also worked in healthcare so while I didn’t strictly follow the family tradition, I still had a keen interest in health. That year I decided I was going to enter the European Health Journalism Awards. The theme I chose was rare diseases. So, I contacted the Genetic and Rare Diseases Organisation (GRDO) and asked to be put in touch with a rare disease sufferer. Later that week I interviewed a woman about her disease, Ehlers Danlos Syndrome (EDS). Little did I know that the answers I has been searching for about my own illness had landed right on my lap.

There is an old saying within the medical profession: ‘When you hear hoofbeats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.

My symptoms started as a child but got really bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day. A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much, that I look pregnant. After my son was born five years ago, I had no choice but to fight the fatigue. I am not anemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world. People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon.

I was living in constant pain for years, feeling exhausted every single day and life on a day to day basis was unbearable. I felt as though I was going crazy. All tests, scans and x-rays were coming back negative and my doctors came to the conclusion that I was depressed, that my physical pain was a manifestation of something that was purely emotional.

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Yes, pain and sleep disturbances can be symptoms of depression. Of course by that point, I became depressed. These doctors were the experts and who was I to argue? I was put on nearly every single anti depressant available on the Irish market at one point or another. Still, the pain and fatigue continued, so after eight years taking these pills, day after day, I was numb, floating through life. I felt useless as a mother, wife and friend.

Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again. But things changed for me in 2012 when I interviewed that girl. For the purpose of anonymity, we will call her Anna.

Anna has a condition called Ehlers Danlos Syndrome (EDS). EDS is a Connective Tissue Disorder. People with the condition produce faulty collagen, which is the glue that holds the body together. In EDS, this ‘glue’ is more like chewing gum and causes the joints to be loose, often resulting in dislocations. However, collagen is present throughout all areas of the body and therefore EDS is a multi-systemic condition with secondary conditions present in most cases. When Anna explained her symptoms, I wondered did I have something similar? I was so touched by her story and felt connected to this young woman that we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, in late 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.

I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Ehlers Danlos Syndrome. I cried with relief that finally I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments. The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life.

After my diagnosis, I began weaning off the anti depressants. That was two and a half years ago and I haven’t looked back since.

I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild compared to some of my friends and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come. The biggest help for me through all of this has been Facebook and speaking to other people with EDS. They are enormously supportive and there is a real air of solidarity. Everybody is supportive and no matter how trivial I thought my problems were in comparison, the support has been immense. Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available especially for our children.

My son AJ is six years old. In 2014 he was diagnosed with Hypermobility EDS. I had him seen by the Rheumatologist that diagnosed me. AJ bruises very easily and I worried that teachers might question whether he was being abused. Sadly, this is not an uncommon fear amongst the EDS community. Children have been known to be removed from the family home as their parents are suspected of abuse. Thankfully, his school has been extremely supportive, even helping us organise an SNA for him. AJs’ EDS is extremely mild at the moment. But, he struggles in school, especially with concentration and writing. This is common with EDS kids. He has sensory issues, which makes it extra hard for him. His pelvis is also unstable so sitting for long periods is impossible for him. A care plan has been put in place for him in school next year. Alex is a happy child though and has never had a severe injury, as of yet, for this, I am thankful.

In 2015, I was diagnosed with Orthostatic Intolerance and Vasovagal Syncope. I still have a long list of referrals to attend to investigate the array of health issues. There is a question mark over MS, Chiari Malformation, Gastroparesis, to name but a few.

The latest addition to our family is our little Olliepop, our 9 month old daughter. Obviously, she hasn’t received any diagnosis yet. But, deep down, I know she has EDS. Her sclera are extremely blue, a sign of EDS. The Public Health Nurse also noticed how flexible Ollie is, so much so, that she has been referred to physiotherapy. She suffered her first dislocation at just 7 months old. I fear for my little girl and what may happen to her. But, having a parent with the same condition will work to her advantage. She will be believed. She will not go decades wondering what the matter is.

Until next time,

Z.M

A letter to my children

 

To my little darlings,

I am here watching you both sleep. It’s 5.06am and I’m awake because I’m in pain. It’s peaceful here with only the sound of you breathing, the cat purring at your feet and the tapping of my fragile fingers on the keyboard.  As I watch over you both, I think of all the things I wish and hope for you and your futures.

I wish that medical professionals will believe you when you tell them there is something wrong. I wish that when you tell your teachers you’re not feeling well, that you will be believed. I wish that when you tell me and your Daddy that you need help, that we can do that and to the best of our ability.

I hope that as you grow up, that we can do everything in our power to prevent you from experiencing the type of pain and anguish that I go through almost every day. I hope that I can be a good enough mom for you both. Most of all, I hope that you won’t grow up to hate me because I was too sick to play or get up out of bed. I hope that you will understand that I didn’t get up out of bed because I was saving my energy to do something fun with you another day.

I pray that you will grow up and live a normal life. I pray you will get the best education, in life and in academia. I pray you will find a job you love but never feel like it is work. I pray you find love, with man or woman and they will accept you with all your flaws and imperfections. I pray that you appreciate them, as I have appreciated your father for loving me, despite the difficult days. I pray they treat you the way your father has so graciously treated me.

slleping zeebra

 

I know that should you experience any of the obstacles that I have faced, you will be far more equipped to deal with them than I ever was. I know you will be strong and determined as you have been in everything you do so far. I know that you will have days where life is just too damn hard, that there seems to be no end to the uphill battle but you will continue on. I know that when you should decide to become parents yourselves that you will know this guilt that I feel now, knowing that it was you who passed on these faulty genes. But, please remember; this is not your fault. You cannot control your genes as I could not control mine.

You begin to stir next to me now. No doubt you are looking for what you affectionately call “mama” as you nuzzle at my chest. And you, my love, at the end of the bed sighing in your sleep as if your dreams are giving you relief.

I want you to know that I love you, deeply and unconditionally. I hope that you know that I’m trying everyday to be the best mom I can and I pray that you will live a healthy, happy life.

All my love,

Mum.