Category Archives: parenting

Seven Mental Health Tips for Mom

Are you a new mama with under-eye bags that could rival a Louis Vuitton? There are so many hats we wear as humans in this rollercoaster society. As adults, we have endless streams of responsibilities and stress. No doubt these factors can have an effect on your mental health at some point in your life.

As a mother, external stress factors affect you. In addition, you are also responsible for keeping a whole separate human.

It is not surprising that stress and anxiety levels become elevated after the birth of a child. What steps can we take to reassert authority over our overworked stress responders?

Check out these seven ideas for managing stress and cultivating stability. These tips can be useful for in your role as caregiver and primary support system. These tips apply to any parent who may be struggling with their mental health.

Don’t Go It Alone

Talk about what you are feeling. One study conducted by Dr. Michael O’Hara, Ph.D. investigated external influence and postpartum depression. It’s reported that women are more likely to suffer from Postpartum depression as a result of not feeling supported by their partner after delivery.

Whether it be a spouse, friend, or support group, reaching out and sharing your emotional journey will not only ease your mind and soul, it will also allow those closest to you to better understand your emotional situation. Many people find talking about mental issues uncomfortable, but remember; that mental health issues are not uncommon in mothers. You are not alone.

Tip from the Zebra Mom:

There are great Facebook groups for mothers with Chronic Illnesses. Contact The Zebra Mom Facebook page for a list of helpful groups. Having an online ‘village’ can do wonders for a mom who can’t get to support group meetings. It is also comforting to know there are others out there who know exactly how you feel. It is far from unusual for mothers with physical illnesses to struggle with their mental health.

Yoga

Yoga has earned a powerful reputation in the healthy living sphere, as a cure-all for both physical and mental health. There is a multitude of ways this practice could benefit you. While yoga alone will not serve as a blanket treatment, there is research that shows the benefits of a regular practice to be tangible. Preethi Kandhalu’s article on the physical and psychological effects of cortisol suggests that the levels of cortisol in people with Major Depressive Disorder declined after three months of practicing yoga, pointing to the conclusion that yoga can indeed encourage good mental health.

Tip from the Zebra Mom:

Hypermobile Mama, please talk to your physiotherapist when considering Yoga and Pilates. These practices may cause hyperextension of the joints which can increase laxity and/or cause dislocations/subluxations.

Meditation

Finally shedding a reputation of hippy-dippy voodoo, the neurological data behind meditation and positive physical changes to the brain speak for itself. The brain is a muscle, and like other muscles in the body can strengthen with tools and exercises.  While many areas of the brain are active during meditation, data shows the significant difference in the hippocampus between meditators and non-meditators. The hippocampus affects stress and emotional responses. These sorts of physical changes can have a positive effect on stress levels. There are many ways to begin a meditation practice. Explore guided online tracks or meditation apps like Headspace. You could even practice an individual exploration of a particular mantra or affirmation.

Tip from The Zebra Mom:

Meditation is also useful as a way of pain management. This study shows there is some evidence for the existence of a non-opioid process in the brain to reduce pain through mindfulness meditation.

Acupuncture

The vision of becoming a pincushion may be off-putting. Yet, the ancient practice of acupuncture has stood the test of time as a method of physical and mental release. A new study explores the science behind what exactly is happening in the body to relieve anxiety.

Tip from the Zebra Mom:

Some study shows that acupuncture may be effective in relieving chronic pain. A trained, certified professional should always be sought but only after you’ve spoken to your doctor.

Relax and look after your mental with

Get your Groove on

Music makes us feel. Whether it’s a favorite song in the car or soft background music, the link between the sound of music and the effect on our cognitive abilities and functions is a massive field of research. Instead of scrolling through your Instagram feed before you fall asleep, play some soothing tunes and let yourself drift.

Tip from the Zebra Mom:

Play music that inspires or motivates you. My own personal mood-boosting songs are Sia’s ‘Elastic Heart’ and Rudimental’s ‘Not giving in’. Blast them and sing them loud! Further research should arise, but there is some correlation between music and pain relief.

Make Sleep a Priority

Without an adequate amount of shut-eye, many other efforts at wellness are going to seem unmanageable. Implementing a regular yoga and meditation practice often leads to an improvement in the quality of sleep. There are further steps to ensure our bodies are getting enough rest. Explore alternative remedies such as aromatherapy. Using lavender or peppermint essential oil before bed can relax the central nervous system. This results in ease of physical aches, anxieties, and tension.

Tip from the Zebra Mom:

If you’re a new mom, you should consider co-sleeping with your baby.  When practiced safe way, this practice allows mom to get more sleep. Studies show breastfeeding moms who also co-sleep get more sleep than those who don’t. I know, that in the early days of being a new mom, co-sleeping allowed me to get a full night sleep. Studies also show that children who sleep close to their parents tend to be more content and sleep better. See Infant Sleep Information Source for information about how to practice safe sleeping. Furthermore, you will also find information on normal infant sleep patterns. See Infant Sleep Information Source 

Spend Time with Yourself

A little pampering goes a long way when it comes to affecting mood and sense of purpose. One study investigated the influence of self-esteem and optimism as measured factors before, during, and after pregnancy, with optimism associated with fewer symptoms of depression during pregnancy and up to six weeks postpartum, with self-esteem correlating with lower depression along with all points of the pregnancy. Cultivating self-love and existing as your best self can make it easier to radiate the same level of love outward.  This love can be for your children and also complete strangers.

Tip from the Zebra Mom:

A pamper session doesn’t have to involve leaving the house. As moms with Chronic Illness, we know it can take a lot of energy going anywhere. Run a bath, light some candles or paint your nails.  Even some online shopping can give you the pick-me-up you needed. Whatever makes you feel good; go for it.

About the Author

Guest post by Marcus Clarke BSc, MSc. from psysci.co. His blog focusses on psychology and science.

Marcus has Bachelors (Hons) in Psychology and a Masters in Health Psychology. Marcus has experience working in a Psychology department within the NHS. He is currently working in the health and social care sector. Marcus supports adults and children with learning disabilities.

You can contact Marcus via email marcus@psysci.co or twitter: @psysci_co_uk

If you would like to guest post on The Zebra Mom, email hello@thezebramom.com

 

 

 

 

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The Eighth Amendment: How it affects People with Chronic Illnesses Part II

The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.

Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.

How the Eighth Amendment could have affected Catherine with Cancer:

For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.

No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.

One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.

My period was a good sign

Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.

No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment.

Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.

In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.

The hypothetical foetus

So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.

It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.

As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.

Shit happens

Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just  does not cut it. And it shouldn’t cut it for anyone.

To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.

Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.

No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.

Criminalising abortion doesn't stop abortion. The Eighth Amendment bans SAFE abortion. Click To Tweet

How the Eighth Amendment could affect Laura with Psoriasis:

I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.

It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.

I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.

Hope for relief

So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.

One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.

The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.

This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.

Potential pregnancy

My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.

If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting.

Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.

I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.

I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.

People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.

No woman has an abortion for fun. —Elizabeth Joan Smith Click To Tweet

How the Eighth Amendment could affect me:

During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.

Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.

The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.

My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.

Traumatic birth

I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.

Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.

Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.

Pregnancy could leave me permanently immobile

Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.

I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.

If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.

Abortion would be the best decision for our family

I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now

. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.

Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.

Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.

The Eighth Amendment needs to go.

I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.

I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.

You cannot have maternal health without reproductive health. And reproductive health includes… Click To Tweet

Some facts from the Abortion Rights Campaign in Ireland:

  1. The Eighth Amendment equates the life of a woman to that of an embryo.
  2. The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
  3. Women have already died in Ireland having been denied life-saving abortion procedures.
  4. At least 150,000 women have travelled to other countries to procure abortions since 1980.
  5. Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
  6. People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
  7. The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
  8. The life and health of a pregnant woman has a much greater value than our constitution places on it.

Thank You to Laura and Catherine for sharing their stories with me.

If you would like to tell your story, email hello@thezebramom.com

 

The fault in our genes and the guilt that goes with it

When you’re child is seriously hurt you can feel so helpless. You might feel guilty for not having a sharp eye on your little one when they injure themselves. If you have a faulty genes and a genetic condition that you’ve passed on to your child, there’s an added guilt.

Last Saturday two year old Ollie Pops N’ Clicks was playing happily with her Dad. We had a lovely day up till then, hubby and I were celebrating our five-year wedding anniversary. My Dad cooked us a beautiful lamb dinner and after we retired into the sitting room in front of the stove. Despite having a pain flare, I was content. That is until Ollie started screaming.

She was pulling on her Daddy’s clothes and then all of a sudden her arm was hurting. Nobody could touch it and if we tried to move it she cried. Hubby knew immediately that we were faced with something that happened in 2015. Ollie was just seven months old then. Her elbow was dislocated. She was behaving the same way she did that cold night in November of 2015.

Ollie 7 months
Ollie the morning after she dislocated her elbow the first time

So, we had to leave Bendy Boy with his Granddad for the night as we sped up to the Accident and Emergency Department (A&E) of the University Hospital. She fell asleep before we even made it out of town. I thought maybe she was OK now but when I touched her arm she woke up screaming.

What is a 45-minute journey felt like hours. We arrived into A&E and we were surprised to see how quiet it was for a Saturday evening. Then again, it was still pretty early. The drunks and those involved in fights wouldn’t be in for another few hours yet.

At the hospital

After we checked in, we sat in the waiting area. Looking around I saw a teenager with their arms in a sling, an old man with bandages around his head and another man with a black eye. I was worried that this scene would upset my already frightened two year old. You could tell exactly what was wrong with these people. All you could see when you looked at Ollie was a little girl with a sourpuss face protecting her little arm.

Just like before, the Triage nurse saw us fairly quickly, when we explained what we think had happened and that I have Ehlers Danlos Syndrome. This is a result of my faulty collagen genes. We were taken into the ward.

The last time Ollie was seen in A&E at just seven months old, she had to have an X-Ray. It was torture for us both. I had to move her tiny little arm around in different positions. She cried, I cried. This time however, there was no need to X-Ray because of her history.

When I told the on call doctor that I had EDS, he asked could he have a look at my hands. He bent my fingers back and pulled on my skin. He nodded and turned to little Ollie who was finishing off her second ever dose of painkillers. In two years she’s never been ill enough to need any type of medication. The only time she’s had Calpol is the first time she dislocated her elbow.

Like a punch to the stomach

me and kids
You do what you can to protect them

Anyway, he attempted to take Ollie’s hand but she was petrified. He did eventually manage to get it and within seconds. He confirmed it was dislocated and he said it’s pretty safe to say that my beautiful daughter has EDS. She has inherited my faulty genes. It was like a punch to the stomach.

We knew this since pregnancy but every time I hear a doctor say it again, the guilt gets to me. Ollie is not officially diagnosed with EDS. We hope to rectify that soon just in case social services do get involved during a future trip to A&E.

Like nothing ever happened

Within forty minutes of arriving at A&E we were out the door. Ollie was back to her old self again and I’m pretty sure she was on a sugar buzz after that medicine. She kept talking about how the doctor fixed her and that she was all better now. We arrived home and the three of us sat on the couch to unwind after a stressful couple of hours.

Ollie climbed on me and fed until she was ready for sleep. She then sat up and threw herself on to the couch. I watched her sleep for awhile. She looked so peaceful and you’d have never had known she was in agony just an hour before. We carried her into her new room and didn’t see her till morning. It really is amazing how resilient kids are and that does make it a lot easier to live with a condition like EDS.

Ollie after hospital
Like nothing happened

I know I cannot control my genetics and that I shouldn’t blame myself for Bendy Boy’s diagnosis and Ollie’s inevitable diagnosis. But, I can’t help it; this illness comes from me. If Ollie is dislocating this early on in life it doesn’t bare thinking what will happen, as she gets older.

What does the future hold?

When she starts playschool, when she’s old enough to play outside with friends, when she climbs a tree for the first time. Then there’s puberty. The majority of girls with EDS experience an increase in symptoms when they reach puberty. This is because the hormone, progesterone wreaks havoc on our bodies. Progesterone makes us lax. It’s why girls and women suffer more during their periods and in pregnancy.

How many more times is she going to be in hospital with an injury? Is she ever going to work or have a normal life? These questions whiz around my head. I try to say to myself what I would say to anybody in this situation; cross that bridge when you come to it.

Overcoming the guilt of faulty genes

But, I will eventually overcome this guilt. How? Because I know I am the best person to get my children through what they will face later down the line. I know what they need, who they need to see and where I can take them to make all this happen. The fight for access for appropriate medical care of which there is none in this country will be my biggest challenge. I will take them to the doctor or hospital as many times as they need and I will do it with empathy.

They will be believed when they tell me they are in pain, because I know what it’s like not to be believed. Not being believed by my parents, by friends and by doctors affected me greatly and I still carry that pain around with me. That pain can be just as great as the physical pain my genes have caused me. An old friend once said that she would rather face a pack of rabid Rottweiler than a parent who wants to protect and fight for their children. If you mess with my kids and their health, I’ll go through you for a shortcut.

Be your child’s champion

The Fault in our genes

Having EDS myself makes me the best advocate for my children. Any patient with a rare disease becomes his or her own expert. I will now be the expert for my children too. From how their genes work to the treatment they need, I will be their champion.

It is a great comfort knowing that they will always have each other to lean on for support. Even when I am not there anymore to fight for them, they can fight together.

So, for anyone out there who is feeling guilty for passing on their crappy genes, know this; it is not your fault. I know more than anybody that it’s hard not to. Take a leaf out of my book; take that guilt and turn it into something positive. Raise awareness of the condition, fight for proper treatment, do everything in your power to make your child’s experience with their condition better than what you experienced.

Until next time,

Z.M

x

 

 

You know you’re a mom with a chronic illness when

Being a mom is hard. Really freakin’ hard. You have sleepless nights that go on for years. Then there are snots, wee, poo, endless requests, and endless questions. Stresses of school, work, childminding, and meal prep grind you down. I could go on and on. Now, imagine being a mom with all of these stresses and then add a chronic illness into the mix. For the most part, it makes no difference to your kids if it’s all they know. You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.

You can be the mom who spends all day resting on the couch or in bed for hours and your kids will still think you’re awesome.

Well, my kids do and I would consider myself a pretty mediocre mother. But I’m often told I’m too hard on myself.

I do cut corners-daily. I’m disorganised. I put things off. I loose my shit regularly. My chronic illnesses are a mix of physical and mental ailments. EDS, POTS, Autonomic Mediated Syncope, anxiety and depression all plague me. Sometimes separately but most of the time they join to create a storm of symptoms.

While most mothers will make a home cooked meal, I depend on my air fryer to cook quick and convenient food. Once a month I do manage something home cooked and special like my Crispy Chinese Pork or my Lemon Chicken Pasta. But for the most part the kids live on chicken or fish goujons or chicken and pesto pasta. Daddy does the majority of the cooking but with a budding business and all the other household chores, he simply doesn’t have the time or the energy to be making food from scratch.

“Why don’t you do meal prep and freeze?” I hear you say. Yep, I get these notions all the time. But then fatigue plagues me or my wrist pops out of place from chopping. In a town of 5,000 people, we have approximately 12 take aways. Wouldn’t it be great if there were a meal on wheels service for those with chronic illness? Or wouldn’t it be great if the village mentality still existed where the whole community helps out those who are struggling? Wouldn’t it be great if we were provided with balanced dishes that tasted just as tasty as a burger and fries from the local chipper? There’s a business idea right there.

In my mind, I’m supermom. I come up with all these Bree Van de Camp type ideas like cooking breakfast muffins or making clothes for the children. In reality, I’m lucky to get dressed and put my make up on once a week. Most people don’t have to decide on whether to wash and dress themselves or feed their children. Most people don’t have to decide whether to cook a decent meal or to stay awake long enough to make sure the children don’t kill themselves.

I’m not a “fed is best” advocate, far from it. I truly believe what we feed our children is of the utmost importance. The science shows that what we feed our children in infancy and childhood directly affects their long-term health and eating habits as they grow into adulthood. I know we could make better choices and soon I hope to collaborate with some foodies to offer some recipes that are suitable for the whole family and that are “spoonie” friendly for parents.

So now I have had that little rant off my chest, it’s time to make things a little lighter. Here are some of the signs of being a mom with a chronic illness.

You know you're a chronic illness mom when.

You spend a good portion of your day in pyjamas

It’s probable that you own more pairs of pyjamas than actual clothes. You figure, I don’t need to go anywhere today so what’s the point in spending spoons on getting washed and dressed. But, when you do get washed, dressed and put make up on your good days, you feel more human. Sure you might be exhausted from prepping yourself for the outside world but it does wonders for your mental health.

You get takeout more than you should

Sometimes when you literally can’t move during a flare up, you can’t get up to pee, never mind having to stand at the kitchen counter and then dealing with the heat of the cooker.  But when you manage to make a delicious home cooked meal, you feel like Gordon Ramsay (minus the constant swearing…mostly).

Your kids get full meals while you live on crackers and coffee

You do your best to nourish your kids. You’d rather spend your spoons on making sure they are well fed. You get so nauseous or fatigued that the last thing you want to do is eat. So you when you are feeling peckish you’ll grab the first thing that comes out of the fridge or cupboard. It’s taken me years to figure out how to eat healthier snacks that have some form of nutrients. I do like crackers on days that I’m nauseous so I buy pre hummus for some protein. A pre-made salad or a handful of nuts are a light handy snack that will give you the boost to look after your munchkins.

You say yes to your kids even when you shouldn’t just to have some peace and quiet

Saying yes when you should to all sorts of things that you know you shouldn’t. You just want them to be quiet for five minutes. We simply don’t have the energy to argue when we are in pain or fatigued. Don’t beat yourself up when you say yes to that extra packet of crisps or chocolate.

You say “not today” frequently

We say yes to the things we shouldn’t and no to the things we should. You would love nothing more than to take the kids out or let them have a play date in your house. The guilt is real. You want to give your kids all that they desire but sometimes it’s better to save your spoons for a day you feel better.  Then you can all enjoy yourselves. There will be a day you can yes to that playdate or day trip. Rest up today for what you want to do tomorrow.

You manage to wash and dress the kids while you look like you’ve been dragged through a bush backwards

Your kids are dressed beautifully with shiny teeth and brushed hair almost every day. They could pose on the cover of a shopping catalogue. You on the other hand, you look so dishevelled that you could easily pass for someone who’s just found her way to civilisation after being lost in the woods somewhere. If I need to look presentable while still feeling comfortable I put on my sports bra (cause under wired bras are the devil) and a jersey cotton jumpsuit like this one from Boohoo. I feel super comfy but I look super chic. Plus jumpsuits are a great time saver-no need to pair up tops and bottoms. Jersey cotton is a chronic illness sufferer’s best friend.

Chronic Illness mother with glasses and messy hair
The disheveled look is so in right now Credit: Adobe Stock

TV is your best friend

You’ve probably watched everything there is to watch on Netflix. When the kids are at school and you’ve managed to one productive thing that morning, you find yourself in need of a rest. If you’re anything like me; reading a book during the day will simply not do. Two pages and I’m out like a light. TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily.

TV is always there for you-no matter what. You can be transported to another place and forget, just for 30 minutes, that you’re on the couch involuntarily. 

As soon as you’re diagnosed with a chronic illness you should automatically have a free subscription to Netflix. Netflix and chill and pills for us! Oh my!

The Internet is your social life

Going out for coffee, going for drinks with the girls is a rarity. People used to come by to have a cup of tea and a chat but they’ve stopped coming. Since you’ve been diagnosed with a chronic illness, lots of things have changed. So social media becomes your social life. You can connect with others in the exact same situation with just a couple of clicks.

Even though you may have not met these people in real life, you feel super close to them because they know exactly what it’s like for you.

We do have the tendency to get lost in social media though. I noticed this about myself recently so I signed up for a creative writing class. It’s just 2 hours, one night a week. Nothing to heavy and I find writing a good therapy. With so much life experience, I’ll have a lot of inspiration to draw from.

With chronic illness, the housework is a constant stress

You would love nothing more than to move ever piece of furniture out of the way and get cleaning the collection of food, dust and small toys. The pile of laundry is giving Everest a run for it’s money and no matter how hard you try, you just can’t keep up. Sometimes you wonder if you’ll end up on an episode of Hoarders. But, in reality, your house is probably not as bad as you think. In fact, you could probably walk into almost any family home and see the same messes. If you do feel overwhelmed, check out my blog about household products that can help you manage your household with a chronic illness.

When you do manage to get to the bottom of the laundry basket you’re not a domestic Goddess, you’re a domestic badass. Celebrate with cake and a rest. That’s an order!

Chronic illness mother holding an iron
You are a domestic bad ass Credit: Abobe Stock

When you achieve something you feel like a total rock star

You’ve woken up and it’s one of those rare days you feel semi human. You do a few loads of washing; you get dressed and even put on a bit of make up. Then you prep dinner while the kids are at school. It’s all done from scratch and smells amazing. Even organising your meds is a huge achievement for you. Whatever you managed to do today, it’s an achievement and needs to be celebrated.

Simply getting up out of bed and leaving the house for a cup of coffee with friends is something to be proud of. Those days can be few and far between so when it happens, you appreciate so much more.

Maybe you have a chronic illness but manage to live normally, that doesn’t mean you are not struggling. It is so important not to compare yourself to others. I personally don’t believe in thinking I’m sicker than anyone else. Everyone’s illness is his or her own. We all handle things differently. A lot of the time, fear of pain and fatigue and of course mental illness as a result of the physical illness can hold us back. No two stories are exactly alike.

So celebrate your achievements no matter how small they may be. Try not to dwell on all the things you couldn’t get to do today. Focus on what you did manage to do, even if it was “just” getting dressed.

Until next time,

Z.M

 

Back to school guide for parents with chronic illness

Hey there, hi there, ho there!

It’s that time of year again, folks! Yep, the summer is well and truly over. We did it! We made it through but now, a new challenge begins.

While getting the kids back to school means our routines will settle again, it also means early mornings, arguments, searching for school books, shoes, lunch boxes, pencils etc etc. Mornings in our house are well, stressful. A symphony consisting of whining, shouting, shrieking and wailing.

In addition to the energy we spend getting ready for the school run each morning, stress can also really take it out of us and even cause our spoons to dwindle before the day has even begun.

This year I am determined in making a change, not just for me and my illness but for the entire family’s mental health. Stress first thing in the morning puts everyone in a fowl mood for the day. I am trying my very best not to sweat the small things in an effort to chill out and ease stress related symptoms.

I know I am not alone when it comes to the stress of the morning rush. Millions of families across the world go through the same thing. We all wish for the same routine, to wake up refreshed, have our breakfast and coffee as a family, to all get ready individually and walk out the door on time and kiss each other goodbye as we all go our separate ways. It may seem like a scene from The Brady Brunch or The Waltons but there are some small tricks I’ve learned over the past few weeks in preparation for the coming school year.

If my chaotic morning routine sings to you, why not join me in my attempt to be more of a Zen like zebra on a Monday morning.

Sunday night, everybody dreads it. You feel you’re wasting a perfectly good day off doing laundry, sorting homework, lunches and looking for books and hearing excuses like “I didn’t have time to do x y and z”.

Below was the trigger for my Sunday night dread. The moment that theme song came on, it was time for bed and began my anxiety, fearing Monday morning.

Not exactly an ominous tune is it? To me it might as well have been the Imperial March or ‘Jaws’ music.

Uniforms

This year, I am going to encourage my 8 year old to help me with the laundry on Friday afternoon. As soon as he comes straight home from school, he is to get changed. This is when his uniforms will be washed. He is well able to use the coffee machine for when Daddy needs his morning pick me up so he is well able to turn on the washing machine.

I know this will serve him well when he is older. I have met so many men (and women for that matter) over the years that didn’t have a clue how to use a washing machine once they cut the apron strings and flew the nest from their mammy.

During the week, my son will get changed straight away and put his uniform away while I prepare a snack for him. If the uniform gets dirty during the week, I usually just do a spot clean. If it gets particularly dirty, a quick wash will usually do the trick.

Homework

For now, my son does not get homework for the weekend. But during the week he can spend quite awhile doing homework due to his sensory issues and poor writing skills. Luckily his Occupational Therapist is going to recommend a laptop this year so hopefully that’ll speed things up. Bendy Boy usually does his homework in the kitchen. He is so easily distracted so we will set up a designated homework space for him this year. After he gets home from school, I usually let him have an hour of rest before we begin homework and physiotherapy. Then he must do his homework and physio if he wants to go out and play with his friends or watch some TV. This has worked for us for the most part in the past but when the days are sunny (almost a rarity in Ireland), I much prefer him to spend time outdoors in the fresh air and socialise with friends. Unfortunately we have had issues getting him to do his homework after play. “I’m too tired. I don’t want to etc etc”, there is nothing to look forward to now.

stressful homework

Lunches

It’s Sunday night. Sugar! No bread! No lunch meat! No fruit! This is also a regular occurrence and sometimes it even happens on Monday morning. Jesus, we really sound like the most unorganised family, don’t we?! If you have a chronic illness though, you’ll know exactly where I’m coming from. Brain fog…am I right? Anyway, this year all lunch box items will be organised on a Friday and rationed for the week.

Lunches can be so stressful, especially when you have a child that’s fussy or has sensory issues. One day they’ll eat sandwiches, the next day you’ll find them squished at the bottom of the bag (I was guilty of this). I am gagging at the very thought of bread in my teeth at the moment! We can’t all be like Martha Stewart or Bree Van de Camp and cook up uber healthy three course gourmet lunches (regardless of health, who has the time?!).

Give them what they like. It’s that simple. No use sending in kale and cucumber sandwiches if you’re just going to find them buried in the bottom of the school bag.

Bendy Boy gets hangry and I mean hangry. Don’t know what hangry is? Let me enlighten you. You know that feeling you get when every little thing bugs you? Someone’s breathing, chewing or you know…their very existence? Then you eat something and everything is alright again. That’s hangry. Think of the Snickers ad. Well, that’s Bendy Boy. When he’s hungry he’s in no fit state to be in school.

Obviously send in nutritious food but make sure it’s something they enjoy! Looking for some lunch box ideas? Check out this blog by awesome sister and nutritionist, Fiona.

As noted in Fiona’s blog, getting the kids involved with lunch packing the night before can take the stress out of what should be a pretty stress free job.

Like Fiona, for me, nothing could be touching and nothing could be soggy. Our poor, poor mother.

Make sure each day that you or your child empty the lunch box and clean it when they get home from school.

Monday-Friday

I refuse to have a screaming match every weekday this year. Nope. It’s not happening. If we sleep in, we sleep in, if we are late, we are late. It’s school. The world isn’t going to end. I am not going to give myself a migraine by stressing out. I’m not going to dislocate a hip running up the stairs like a crazy woman.

Between Friday and Saturday we are going to get everything ready so that we don’t suffer from Sunday night fear and we can enjoy the day relaxing or going on a family outing. So uniform will be ready on Friday and books will be sitting in his bag and by the door waiting.

On Sunday we will prep lunch and make sure coat, hat, scarf and shoes are waiting on the coat hook and shoe rail (right next to the front door).

One of the major causes of arguments in the morning with Bendy Boy is his distraction and forgetfulness. He goes and plays with toys instead of getting dressed and washed, he spends time singing instead of brushing his teeth (if he even remembers to do it). Half the time we have to remind him to do the next thing (now get your shoes on etc). So we have come up with a plan. He will have a chart in his room that will help him get ready on time in the morning. These are available all over the internet like this one . We are going to make one ourselves from card paper (spoon friendly activity) and write each task for the morning.

  1. Make bed
  2. Get dressed
  3. Eat breakfast
  4. Put dishes in dishwasher
  5. Brush teeth
  6. Wash face
  7. Brush hair
  8. Put on your shoes, coat and schoolbag.

Your job

Because kids have the attention spans of well, children. We can’t rely on them to be responsible for all school prep. So have your own chart on the fridge to check off over the weekend to make sure everything runs smoothly.

  1. Uniforms
  2. Lunches
  3. Check homework
  4. Check for notes in bag about school trips or events
  5. Make sure books and pencil case are in the bag
  6. Have your own clothes ready for the morning
  7. Keys ready by the front door
  8. Check forecast. If the weather is particularly cold make sure to get up earlier to defrost your windscreen and in case traffic or road conditions are difficult to get around.
  9. Set your alarm.
  10. If your kids are getting off school early set a reminder in your phone to pick up or organise someone to pick up in case you have an appointment or other engagement.

One final thing, make sure you try and get a decent night and wake up before the kids and take your meds so you’ll feel more equipped to deal with what lies ahead.

walking to school.jpeg

Do you have any tips or tricks to help save time in the morning? Let me know in the comments below!

As my Dad always taught me; fail to prepare and prepare to fail!

Until next time,

Z.M

x

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How ‘attachment parenting’ helped me with my chronic illness

Hey there, hi there, ho there!

Soon I’ll be back to London for my next round of tests and physiotherapy. The smallies will also be seeing their paediatric physio in the Hypermobility Unit in London. Going abroad with small children can be so stressful and takes up so many of your spoons. I remember with Alex, everywhere we went, even for a short trip to the city we had a truck load of things to bring with us. This time with Olivia it is so much easier because my parenting technique is so different.

Attachment Parenting&Chronic Illness

So what is “Attachment Parenting”?

Well, for me I just call it parenting, it’s the biological norm to raise a child so I hate putting a label on it.

According to parenting science.com:

“Attachment parenting” is an approach to child-rearing intended to forge strong, secure attachments between parents and children.”

Attachment Parenting is often referred to as AP.

But how does AP differ from any other type of parenting?

AP is associated with a number of practices, including:

Baby-carrying or “baby-wearing”
Breastfeeding on cue
Nurturing touch (including skin-to-skin “kangaroo care” for infants)
Being responsive to a baby’s cries
Being sensitive and responsive to a child’s emotions (e.g., by helping her cope with nighttime fears)
Co-sleeping

In addition, attachment parenting advocates often promote “positive parenting,” an approach to discipline that attempts to guide children by emotion coaching, reasoning, and constructive problem solving.

However, proponents of AP–like William and Martha Sears, who coined the term “attachment parenting”–note that there is no checklist of rules that parents must follow to qualify as “attachment parents” (Sears and Sears 2001).

Family circumstances may prevent parents from carrying out every AP practice. What’s really important, argues these authors, is sensitive, responsive parenting-— understanding and addressing your child’s needs in an affectionate way.

Similarly, the founders of Attachment Parenting International argue that that attachment parenting is really about adapting a few general principles–like providing kids with a consistent, loving, primary caregiver–to the particular needs of your family.

This is not the same as being overly-protective. By definition, securely-attached kids are not overly clingy or helpless. They are the kids who feel confident to explore the world on their own. They can do this because they trust that their parents will be there for them (Mercer 2006).

So how has AP practices helped me with my chronic illness?

Babywearing

When I was pregnant my Hypermobile Ehlers Danlos Syndrome wreaked havoc on my body. I was wheelchair bound by 5 weeks into my pregnancy because I developed severe Symphysis Pubis Disorder (SPD)  and my Autonomic System was all over the place.

I knew that there was a pretty good chance that I would still be affected with the SPD post partum and I was right. Two years on and I still suffer with it. How was I going to push a buggy while in a wheelchair?

Babywearing was my answer. Even on days where I couldn’t wear Ollie for whatever reason, Daddy wore her. It was a lovely way for them to bond. While I liked my ring sling, he was more into the wrap type slings. My coordination couldn’t handle the wrapping at all.

Three months after her birth, I didn’t need the wheelchair as frequently but I still carried her. I knew that I wouldn’t be able to manage lifting and opening up a heavy buggy so just popping my sling into my bag was the easiest option. After the ring sling I opted for the Rock n Rolla Fidella buckle carrier it was badass. Then I switched to a beautiful pink Fidella Mei Tai before going back to a buckle carrier (Nova) as my shoulder became to sore for wrapping. The Nova hasn’t had much use as Ollie likes to walk but I do use it for when I need walk to collect Alex from school or when we are in London. We brought a stroller on holiday once and it went unused, plus it is a pain having to bring it along with the other luggage.

Me sling

In retrospect, I wish I had gone along to a babywearing group to try things out before I bought the Mei Tai. It was only after I rented a Nova from the group that I realised it was exactly what I needed, lightweight, breathable and tidy enough to go in my bag. I would absolutely recommend people to try before they buy.

Babywearing allows you to be hands free as well and baby sleeps contently snuggled into their parents chest.

Marty fence BW

It really is a win/win situation. Baby is happy therefore Mommy is happy.

I can imagine people who are unfamiliar with babywearing wondering how I possibly managed to carry extra weight with weak joints/muscles and pain.

If you’re wearing your baby correctly, you should be well supported and you shouldn’t feel the extra weight bearing down on you.

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Interestingly, I was sent a link to a blog called Babywearing with Disabilities recently. Until I began writing this post, I hadn’t opened it. Imagine my surprise to find out the woman who wrote the blog actually has hEDS too! She offers some very good advice about how to babywear when you’re disabled. Really worth a read. Further reading about the general benefits of babywearing for parent and baby can be found here.

Slings come in so many gorgeous prints and designs. Say goodbye to your shoe/handbag addiction and say hello to telling your other half “Oh I won that on a dip.”

Marty Ollie

Breastfeeding on demand

Sadly due to poor support and advice, Alex was only breastfed for just over two weeks. He had an undiagnosed tongue tie which caused me to be in a lot of pain when feeding him. Yet no healthcare professional said anything bar “it happens”. No. Breastfeeding should not hurt. That’s a different story that you can read about here.

Anyway, I remember being so exhausted when we switched to formula. Having to make up bottles in the middle of the night, dealing with reflux and constipation, the usual drama with formula was just so much hassle. Even with two of us taking turns to get up. I was also pretty annoyed that the weight that had been falling off me for the first two weeks stopped melting off me.

Luckily, armed with evidence based information and a fantastic network of breastfeeding mothers, I was determined that this time it would work out. It’s crazy the amount of misinformation being spread not just by ill informed loved ones but by actual health care professionals too. I actually interviewed one of Ireland’s leading IBCLCs and the world renowned, Dr Jack Newman about breastfeeding myths.

Anyway, unlucky for us, Ollie was also born with a tongue and lip tie. But, this time I was determined to get it sorted as quickly as possible so that we could continue our breastfeeding journey. After exclusively pumping for 3 weeks and then pumping while also    learning the skill of breastfeeding, we were on our way. Ollie is just two weeks shy of two and honestly, feeding her has been one of my greatest achievements as a parent. Breastfeeding is the biological norm but in Ireland where just 2% of babies are fed by 1 year, it’s a pretty big deal to even get to two years.

Breastfeeding forced me to relax and properly recover after the birth which in itself was pretty traumatic. I had to give birth early as my waters had broken. I ended up loosing half of my blood but the consultant managed to stop the bleeding just as they were calling for blood bags. I was very weak and ill after the birth so lying on the couch for the first 2 months while Ollie built up my supply was ideal. I didn’t have to get up in the night to make bottles and the lovely hormones released during feeding time helped me feel content and loved up. Plus with the extra hand it meant Alex could join in on the cuddles.

BF OA

Breastfeeding also meant that I didn’t have to bring a huge bag filled with bottles and powder everywhere we went. You literally just have your breasts and you grab a nappy and off you go. Babywearing while breastfeeding also meant that I could get on with whatever I needed to do while baby was getting everything she desired; being close to mama and her milk. Best part is that my meds are all compatible with breastfeeding as 99% of medications are, again unfortunately that is another piece of information that isn’t well known amongst a lot of healthcare professionals and new mothers.

You can read more about breastfeeding while being chronically ill here.

Cosleeping/Bedsharing

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We intended to have Ollie sleep in a cosleep cot that Daddy made following this hack. FYI total cost was 65 Euro in comparison to the phenomenal amount of money you spend on a store bought cosleeper crib! The new mattress was the most expensive part.

Anyway, so we had the cosleeper cot attached to our bed and by the looks of it, Ollie would fit into it until she was at least four! Well, nope, this happened:

cosleeper

You know what? It worked out for the best because having her closer to me meant she could feed as I drifted back to sleep and it became a place to keep all her clothes and cloth nappies! Now she is able to undress me and help herself while I stay asleep! Research shows that parents who bed share and breastfeed get more sleep than those who don’t.

Once you practice the safety guidelines, there is virtually no risk in bed sharing, in fact a lot of research shows that babies who are exclusively breastfed and bed share with their mothers are actually less likely to die from SIDS. You only have to look at every other species of mammal to see that the dyad sleeping together is a natural part of child rearing. Hey, the Gruffalos cosleep too!

997034-the-gruffalos-child

You can find some evidence based articles about infant sleep and bed sharing here.

As stated before, AP doesn’t have to be all or nothing. You can formula feed and babywear, you can breastfeed and use a buggy. I just know from my own experience that following my mammalian instincts has helped me to cope with parenting while having a chronic illness a whole lot easier.

Until next time,

Z.M

x

 

10 things to do with your children when you’re stuck in bed

Hi there, hi there, ho there!

It’s Mother’s Day here in Ireland. While most moms enjoy having a day to relax, those of us with chronic illnesses would love nothing more than to actually get out and about and do something fun. However, no matter how much we want to, sometimes it just isn’t possible to move from our bed, let alone leave the house.

As a Spoonie, days where I have a random burst of energy come far and few between. When I do feel good I take advantage and go on a spoon spending splurge with my children. Our favourite activities are going to the beach for a walk, going for lunch/dinner or searching for fairies in the woods. Unfortunately, those days don’t happen very often as my Ehlers Danlos Syndrome and Dysautonomia wreaks havoc on my body. There are days where I can’t move from my bed never mind actually leaving the house. My illness not only affects me, but my entire family. The children have to endure many days stuck inside because mummy is unwell. So, for those days we try and do things together from the comfort of my own bed. Here are some of the things we do together. I hope it helps another Spoonie parent who may be at a loss with their children on the days they’re stuck in bed.

10 Things to do with the kids when you're bed bound

Read books

One of my favourite things to do as a child was to read with my Father. Going to bed when I was little wasn’t the big fight it turned out to be as a got too old for bedtime stories. His voice even to this day is so soothing. His Anglo-Irish accent is so pleasant to listen to that I could quite happily listen to him read the dictionary to me. Quite often I did! If I didn’t know what I word meant I was sent to his study to fetch the dictionary. There was no Google back then! My favourite book as a child was The Magic Faraway Tree by Enid Blyton.

The_Magic_Faraway_Tree

Considering the first edition was published in 1943, I’m sure the everyday lives of those children brought back some fond memories of my father’s own childhood during the 1940s. When we finished one chapter of that, Dad used to make up stories about a mischievous little girl called Yvette (hmmm I wonder where he got the inspiration for the name) who used to get up to all sorts of mischief. When her parents found out what she did the story always ended there with her parents shouting “Yeeevette!” A few years back I dug out my copy of The Magic Faraway Tree and gave it to my son Alexander when he was about 4 with a note:

“Dear Alex,

I hope this book brings you as much joy as it has brought me.

All my love,

Mum.”

I love reading The Gruffalo with the kids too. Sometimes Alex and I turn it into a song. Alexander will beat box while I rap the story. It’s great fun! Every now and then during the summer when my pain isn’t too bad, you might hear us in the woods reciting the story aloud by heart while we stroll through the rows of beautiful green trees and bunches of bluebells and daisies. Recently we started putting on the torch and getting under the duvet to read. It gets a bit stuffy though.

Watch movies

For as long as I can remember TV and movies has been a massive part of my life. Most things I know about life I’ve learned from television! I try to limit my own kids TV limit but sometimes when you can’t do anything but lie there, TV is a Godsend. I do love the days where I snuggle up with the children and show them the movies and TV shows I grew up watching. I get such a warm feeling watching their little faces in wonder at the magic of Mary Poppins or the original Doctor Doolittle. Of course the old school Disney films like Pocahontas, The Lion King and Aladdin are a must. Movies bring me hope and joy, watching others overcome their struggles sometimes give me a boost or inspire me and that’s what I want for my own children.

Watch funny videos

Sometimes looking up fail or funny animals videos on YouTube is just the thing to cheer you up. Laughter is a great medicine and the children get such a kick out of watching them. Of course do make sure that you are supervising the children when giving them access to the Internet!

Art

Art is a great therapy for everyone, young and old. Grab some crayons/markers/pencils and   a few blank sheets of paper or a colouring book. Art is proven to be beneficial for mental health, something many chronically ill patients suffer from, unfortunately. Creating art relieves stress, it encourages creative thinking, boosts self esteem and a sense of self-accomplishment, increases brain activity and so much more! Make art work a hobby if you enjoy it, it’s a great way to forget about your illness for a while. Creating art can help you work through the feelings you have about your illness.

family art.jpeg

Puzzles

Jigsaw puzzles are not just for rainy days; they’re great for bed days too. If you have a tray a table that you’d usually use for breakfast in bed, you can use that to make your puzzle on. A duvet is no good as one movement and the whole thing will fall apart. Soul destroying!

Play games

Board games are a great way to pass the time and are so much fun. I personally like playing Guess Who with my son because it teaches him to use his descriptive words, improve his concentration and his observational skills. Operation is another great option for fine motor skills, which many children with EDS have difficulty with. Travel sized games are perfect for playing in bed. Sometimes we forego the board games and play I Spy or Simon Says.

board game.jpeg

Creative writing

Creative writing can be very therapeutic for people suffering from mental and physical disorders. Using your own experiences can help you gain perspective and work through emotions and obstacles in your life. Of course, it doesn’t always have to be so serious. Sometimes it can just be funny to take turns making up sentences of a story. So for example if I said, “there was once a unicorn,” My son, Alexander might continue with “who had rainbow coloured poo,” or something as equally juvenile and silly.

Put on a show

Shadow puppets, actual puppets or just themselves a lot of kids like to entertain their parents and show off a song/poem/dance they’ve learned in school. I just love when my children sing and dance for me. It reminds me of when I was a child and my cousin and I would put on shows for our parents at Christmas time. There is a really cringey video of us doing our own version of Father Ted, a comedic show about three Irish priests. Our parents laughed a lot but I’m guessing it was the combination of alcohol and their 10-year-old children saying the iconic lines “Drink, Feck, Arse!” or “That money was just resting in my account.” The two of us really loved being the centre of attention, I can see that in my own children now.

child play.jpeg

 Have a sing song/listen to music

I have to say it but the majority of modern music pales in comparison to the music of “my day”. I grew up listening to Nirvana, Metallica, Smashing Pumpkins, ABBA (I know), The Police and Fleetwood Mac. Now I am partial to a bit of Ed Sheeran, Hozier, Rag N’ Bone Man a few other singer songwriters. But I feel that music isn’t as big on the story telling anymore. Stick on iTunes or a CD player (whatever you have) and introduce your kids to the tunes from your childhood. Take turns with your child and let them introduce you to the music they like. Again, my Dad’s influence comes in here. Driving to/from school or to a hospital appointment used to be my time to have Dad up to date with “new music”. As a teenager I was a big fan of Avril Lavigne and Dad was a fan too. We used to bond with music a lot. Sitting down on a Sunday morning listening to classical music is still a time in my life I look so fondly back on. Sometimes I put on some classical music like The Four Seasons and my son and I close our eyes and talk about what we imagine when we hear the music.

Knitting/crocheting etc

 Learning to knit/sew or crochet is a skill that will always be useful and also enjoyable. The sound of the clicking needles in a rhythm has always been comforting to me. Sadly, knitting isn’t an option for me any more since I began dislocating my wrist. Knitting was dying out for a while but it has gained popularity again when many celebs said it has helped relieve their stress. Teaching a child to sew a button is a skill that they’ll always have as they grow up. These practices are also a good way to improve motor skills.

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Pick something to learn about

My kids love learning and my son’s choice of book is more often than not, an encyclopedia or history book of some kind. His thirst for knowledge is contagious; I love to learn with him. Even as adults there is still so much about the world we have still to discover and learning about it with your children is so, so rewarding. If my son asks me about how something works and I don’t know, we will try and find a book, or if we don’t have time (or I’m ill) we will Google it. This probably stems from my childhood. Whenever I didn’t know what a word meant, my Dad used to send me to his den to get the dictionary and look it up. This led to me knowing the longest word in the English dictionary by the time I was six (it’s floccinaucinihilipilification in case you’re wondering). Interestingly, this word never came to use in my days as a journalist! YouTube has some great educational videos produced for children. Netflix also has a brilliant selection of kid friendly documentaries. Our favourite are the dinosaur themed documentaries.

 Have a conversation

Every now and then I’ll ask my son questions like “What’s your favourite book?” “What’s your favourite colour?” Anything I can think of I’ll ask him. It makes him feel important to talk about what he likes and that mom is taking a real interest. Every time I ask his answer changes, it’s the nature of children, I guess. Ask them about their friends and school or what they want to be when they grow up. You could plan a nice day out for when you’re feeling better.

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“Feeling guilty often comes part and parcel of being a Spoonie parent. But remember; you can only do your best and you won’t help anyone, including yourself if you run yourself into the ground. All our children want is to know they are loved and have some quality time with their parents.”

Until next time,

Z.M

x

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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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.’

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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

 

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