Category Archives: family

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.

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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.

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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.

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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.

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 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

Friday Feelings with The Zebra Mom

Hey there, hi there, ho there,

This week I didn’t have any guest post submitted so, I decided to do a Friday Feelings post myself.

Usually I explain what my guests suffer from and a they tell us a little about themselves but I’m sure anyone who follows my blog is well aware of my conditions and the things I am passionate about. I will take the oppurtunity to plug my social medias though :p You can find me on Facebook, Twitter, Pinterest, Instagram and Snapchat (see the snap code in the header)

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So we will just dive straight into this week’s Friday Feelings post

 

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“Dear Diary,

It’s Friday and for once, I’ve had an excellent night’s sleep and I’m feeling relatively OK. Usually I wake with something wrong but luckily, I have no more pain that the usual aches. I am so happy that I’m feeling well as can be since I am celebrating my 30th birthday tonight with family and friends. It is not often I get to socialise and get dressed up so when it does happen I appreciate it so much. I’ll probably run low on spoons after I finish getting myself ready but I am hoping the adrenaline will kick in and help me enjoy my night. I also have to be weary of certain lighting in pubs as my sensory issues can cause havoc when I do get the chance to go out. My typical Friday nights are usually much more boring. I sit at home and spend my time watching the Gilmore Girls or socialise on Facebook.

Even though I feel OK right now the last few weeks my EDS and Dysautonomia has been acting up a good bit forcing me to use my wheelchair. I hate using it, it makes me feel very self-conscious but I know I would be much worse off if I didn’t use it. Yesterday we went into the city to take our little boy shopping for new party clothes and if I didn’t have my chair, I wouldn’t have been able to enjoy our time. It’s a frustrating time for us at the moment as we are currently fundraising to get back to London for treatment. This 5-night trip is costing us 5,000 Euro. Luckily I have some really good friends and family who helped us raise 765 Euro a couple of days ago at our coffee morning. We couldn’t believe that that amount was raised in just a couple of hours! The community really came together to support us. I was truly blown away.

The future is uncertain but I am hopeful that getting treatment in London will give the children and me a fighting chance at some normality. I am having Autonomic tests in London to find out exactly which type of Dysautonomia I have. Here in Ireland I have been diagnosed with Orthostatic Intolerance and Vasovagal Syncope but the experts in London believe I have Postural Orthostatic Tachycardia Syndrome (PoTS). They believe Alexander also has PoTS but luckily he isn’t greatly affected. I also see symptoms in Olivia too.

I think as time goes on, people are understanding our conditions better and know that they are invisible illnesses and that some days I need my wheelchair and some days I don’t. I think the fact that we have had to go to the UK and fundraise thousands made people realise the severity of our conditions. It’s a shame that it has had to come down to this but I am content that those nearest and dearest to us take things seriously. I have had negative experiences with the way people has viewed EDS before. One doctor said that people with EDS didn’t suffer from chronic pain (I know, I know) and that I more likely had Fibromyalgia. Now, many experts do believe that most people diagnosed with Fibro have actually been misdiagnosed and that they actually have some form of Connective Tissue Disorder. I told her this and she was most unimpressed to be challenged. Pregnant and wheelchair bound, I left that appointment in tears in pure anger and frustration. A Rheumatologist diagnosed me with hEDS at that point but I saw another one to confirm the diagnosis because I felt the private consultant’s diagnosis wasn’t being taken seriously. I had the diagnosis confirmed by two experts in London so I am pretty confident hEDS is the right fit but I am going to have genetic testing just to be sure as I do fit a couple of the types of EDS too. I think anyone diagnosed with hEDS should have genetic testing to rule out other types and other Connective Tissue Disorders. If the tests come back clear, I’ll be happy sticking with the hEDS diagnosis.

Anyway, better start getting ready for my hair appointment and party. Wish me luck that my EDS or Dysautonomia doesn’t kick off!”

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Till Sunday,

Z.M

x

 

 

 

 

9 ways to keep the romance alive when you’re chronically ill

Hey there, hi there, ho there!

So last time we discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.

Kiss. 

When you’ve been with someone a long time, sometimes you genuinely forget to kiss-even if you’re not chronically ill.

“Even just a quick touch of the lips.”

When you’re so busy concentrating on your illness and/or family life it can be easy to forget to just stop and have a moment together.

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Do something together at least once a month.

Whether it’s getting in some alcohol free wine/beer, watching a romantic movie or having dinner together-make the time to spend a couple of hours together not talking about family/illness etc. Even a gentle stroll on the beach/ woods while holding hands can be just enough to keep that flame-a-flickering.

Go back to where you first met.

If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friends house and help them get you ready.

“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”

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Do something nice for each other.

It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find.  Make a playlist of all their favourite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.

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Massages

Get some nice oils, light some candles and help get those pesky knots out. PLEASE do be careful if you’re massaging someone with a hyper mobility syndrome-last thing you want on your romantic night is to end up in A&E!

Go on a weekend break/holiday.

If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid).  A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.

Renew your vows.

You don’t need to recreate your wedding day-unless you want to. You can simply organise to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.

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I love you.

Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.

“Let your significant other know that they are loved.”

Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!

Sexy time.

If you can do it and want to, go for it. 90% of the time us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Make yourself feel sexy by having your hair/ make up done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or PJs. Do whatever makes you feel good about yourself. Sometimes after all that effort-the last thing you want to do is to do the horizontal mambo but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t have to necessarily have to “go all the way” sometimes some heavy petting can be just as nice.

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Till next time,

Z.M.

x

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A letter to my fellow chronic illness sufferers.

Hey there, hi there, ho there!

Recently I’ve read posts from fellow chronic illness sufferers about having to endure ignorant comments from strangers and sadly, friends and family about how how hard it must be for those in their life caring for them without their own difficulties being acknowledged. Now, I’m not saying that life for carers isn’t hard. They have it so tough but, what outside observers tend to forget is that there is a vulnerable person, in pain, unable to look after themselves who have feelings of loss, despair, grief and insecurity. Many sufferers are still dealing with the fact that they are not 100% independent. That can be a very difficult pill to swallow.

For those of you who have had to endure such ignorant comments, this letter is for you.

Do you ever have days where you think: “God, I’m such a burden.” or “I need something but I don’t want to ask for help again.”?

I do. All. The. Time.

How many of us have been with friends or family and listen to them go on and on about how wonderful your husband/wife/partner etc is for taking care of you? Most of them will be somewhat diplomatic but, there are times when you are unfortunate enough to endure a conversation with an ignorant friend or stranger.

You know your spouse/partner is wonderful that’s exactly why you are with them in the first place. You don’t need someone to tell you how hard it is for them to put up with your moods that are a result of fatigue, pain and pure unadulterated frustration. You don’t need  them to remind you that you depend on them to help you with tasks that any healthy person could do for themselves.

When someone says: “Isn’t he/she great for looking after you?”

This is what we hear:

“You’re a burden on your husband. You know that, right? If you didn’t have him you would struggle and probably be alone.”

OK, OK. It might sound a bit dramatic but if it’s what you hear almost every time your illness is discussed it grates on you. Words are funny things. When people are already insecure in themselves they can read into things that may not have any ill intent. Chronic illness eats away at our bodies but it also eats away at our minds and self confidence.

You hear how great your partner is more than you hear how great you are for not getting into bed and never coming out of it no matter how much you want to do that sometimes. But that’s the nature of having a chronic illness, isn’t it? People simply don’t get it. Unless you have a life threatening illness, nobody really listens. Chronic illnesses aren’t “sexy” diseases that can be marketed as well as life threatening ones. People don’t get that your symptoms are for as long as you live-there is no cure and there is no looming death sentence.

Yes, it is really hard for caregivers. Especially for parents and partners of people with chronic illnesses. Caregiving can often be a full time job without the pay. But, imagine how hard it is for the person who is being cared for. Having to be cared for can be downright humiliating. You need help getting off the toilet when your hips are giving you trouble, you need to be lifted out of the bath because you’re dizzy. You need help dressing because your so fatigued after having a shower. You need someone to cook and clean for you because you simply can’t. It takes years for people to come to terms with this-if ever.

You shouldn’t have to be considered “really special” to take care of your significant other, isn’t that the whole point of committing to each other? In sickness and in health etc, etc? Isn’t it part and parcel of choosing to have a child or deciding to spend your life with someone?

I have so many friends who are chronically ill who have their husbands/wives/mothers etc acting as their carers. I know they have had to endure ignorant comments from strangers about whether or not they should have children, that they are a burden on their partner and that their partner is “a really, really great guy that puts up with a lot”. But, I know those same people fight every single day to face their illness and a world that is filled with so much ignorance head on. I also know that these people are so appreciative of everything the people in their support system do to make their lives that bit more bearable. I see them declaring their love and appreciation of their caregiver to the world. But I also know that these same people lay next to their partners on the couch or in bed after a really hard day. They look them in the eye and thank them for everything they have done today to help them endure the pain, the fatigue and all the horrible symptoms they put up with every single day.

Of course you should thank them. They didn’t ask for this life either and yet, they do it anyway and without complaining (well, most of the time anyway). Doing something special for your caregiver every now and then is a nice way to show your appreciation. If your significant other is your carer, sometimes the romance can dwindle and the relationship can go from lover to carer. So it is important to do something together that keeps that passion between you going. Even if it’s snuggling up on the couch and having a kissing and cuddling session. It goes both ways, though. Sometimes those needing to be cared for can feel inferior, childlike, useless,unattractive and yes, a burden. We will explore maintaining romantic relationships next week.

So you, reading this. If you’re chronically ill and have a loved one caring for you remember this; you’re not a burden. You didn’t choose to be sick. You take on the biggest task of all. Surviving.

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Life has given you a pretty crappy hand but you’re still here and that should be applauded. You put up with more things in one week than most people deal with in a lifetime. You are good enough. You are not “lucky” to have a parent/partner caring for you. Sure, there are people who wouldn’t be up to the task of looking after a chronically sick loved one but that doesn’t make you any more “lucky”. Luck has nothing to do with it. You fell in love with a good person and they fell in love with you for the same reason. You are not your illness. It does not define who you are-unless you want it to. Being chronically ill does bring out the not so pleasant side of people but it also embellishes all the wonderful traits of you too. You learn to be more compassionate, more appreciative of the little things in life like a walk on the beach or an hour in the playground with your child. You learn to take opportunities-when you can. You learn that saying no is perfectly fine. If you’re not up to it, you don’t do it. Chronic illness takes so much away but it allows us to see the world in a unique way.

Bottom line is your caregiver is a wonderful person but, so are you.

Till next time,

Z.M

x

Being Chronically Ill means..

Hey there, hi there, ho there!

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

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

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

Hope you enjoy my latest blog!

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

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

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

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

You have more sets of PJs than actual clothes.

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

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

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Your bed is your best friend and your enemy.

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

You often develop a less than desirable odour.

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

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

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

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

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

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

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

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

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You have watched anything worth watching already.

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

Till next time,

Z.M

x

A Simple Guide to The Ehlers Danlos Syndromes

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

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

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

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

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

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

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

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

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

What is EDS?

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

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

What causes EDS?

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

How did I get a faulty gene?

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

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

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

What does EDS feel like?

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

How does EDS affect people?

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

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

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

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

In addition there may be

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

Digestion.

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

Nervous System

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

Dysautonomia affecting the heart.

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

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

What are the symptoms for POTS?

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

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

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

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

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Can EDS kill people?

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

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

What treatments are available for people with EDS?

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

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

Do all people with EDS need wheelchairs?

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

Can you catch EDS, POTS or Gastroparesis?

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

 How can I help someone with EDS?

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

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

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

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

Z.M

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Teaching our children about consent should start in early childhood

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

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

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

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

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

“She shouldn’t have walked home alone”.

“How much did she have to drink?”

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

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

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

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

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

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

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

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

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

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

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

I responded to this relative with a question.

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

This made my relative stop and think.

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

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

It went something like this:

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

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

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

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

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

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

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

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

15% of perpetrators were under 18

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

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

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

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

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

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

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

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

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

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

Not saying no doesn’t mean yes.

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

Practice what you preach.

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

Further reading and helplines:

http://www.rcni.ie/wp-content/uploads/RCNI-National-Stats-2014.pdf

Rape Crisis Centre helpline:

1800 778888

or see the website www.rapecrisishelp.ie.

Until next time,

Z.M.

 

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.

gymnurstics

2. Your child thanks you.

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

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

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

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4.You’re nursing two toddlers and

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

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

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or this one

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

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

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

7. Nipple twiddling becomes a game.

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

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

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

Following on from that

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

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

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

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

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

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

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

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

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

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and finally

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

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

A final word..

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

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

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

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

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

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Our medical trip to London. Part 1

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

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

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

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

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

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

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

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

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

Here is an excerpt from my own medical report:

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

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

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

And Bendy Boy’s report:

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

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

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

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

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

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

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

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

So, until next time,

ZM.

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Household Gadgets for Spoonies-Part 1

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

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Laundry-

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

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

Cleaning-

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

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

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

 

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

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

Tidying up-

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

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

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Some other gadgets for cleaning and tidying:

 

Messy in the kitchen? Invest in some stove top protectors 

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

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

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

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

Till next time,

Z.M

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