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children, chronic illness, chronic pain, family, Guest Posts, health, mental health, parenting, tips

Seven Mental Health Tips for Mom

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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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children, chronic illness, chronic pain, disabiliy, dysautonomia, Ehlers Danlos Syndrome, family, health, parenting, spoonies, tips

Back to school guide for parents with chronic illness

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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

Don’t forget to follow me on Facebook, Twitter, Instagram, Pinterest and Bloglovin‘!

 

 

 

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Awareness, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with Zebra Writes

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Hey there, hi there, ho there!

This week I spoke to Sara from zebrawrites.com. In a previous life, Sara worked as a school psychologist and now she works part-time as a behavioural therapist. Sara writes about her experiences on her blog.

Sara’s primary diagnosis is Hypermobile Ehlers-Danlos Syndrome (hEDS). You can find Sara on Facebook and Twitter.

Sara

 

Now that we know a little about Sara, let’s have a look at her Friday Feelings entry:

giphy

“Dear Diary

Fridays are hard for me because I am very tired by the end of the week, especially if I have been working. I most often spend Friday evenings at home, enjoying the company of my pets and my husband. I prefer to meet up with friends on a Saturday or Sunday during the daytime, in a quiet place. My intractable migraine make me extremely sensitive to light, noise, and smell – so I have basically given up on attending parties or visiting bars during prime hours. When I’m feeling particularly well I do enjoy playing trivia with friends at a local bar on a weeknight (when it is quieter).

At this moment I feel both hopeful and frustrated. I am still young, and there is so much that I want to do with my life.

I want to be a mother in the future, and I hope that I will have the energy to be a good one – but I know that sometimes I will fall short of my expectations for myself – in this and other endeavors because of the limitations that my illness imposes on me. I have hope that new medications that are on the horizon may be able to control my daily migraine pain, but also am tired of waiting. I worry that my body will continue deteriorate. In the meantime I’m learning to sit with the pain and be as functional as possible while enduring it. I’m doing my best to strengthen my body with physical therapy. I hope that it will be enough.

I think that people have difficulty understanding chronic illness unless they have experienced it for themselves. It is hard to understand the fluctuating nature of our pain and level disability or ability on any given day. I also think it’s difficult for people to understand a condition for which there is no cure or finite ending.

EDS is not (likely) going to kill me, but it’s also never going to go away. It is a part of who I am. When confronted with this fact, most people want to “fix” it, or come up with a solution.

They might offer unsolicited advice, or suggest you’re not taking care of yourself well enough in order to ease the discomfort our condition makes them feel. I know that they mean well, they really do. So if you are a person with a chronic illness I challenge you to educate others about your life, and what it is really like. If you are a person who knows someone with a chronic illness, I challenge you to quit trying to “fix” it for them, and ask them about their experiences and true feelings.”

Thanks to Sara for taking part in our Friday Feelings blog. Can you relate to Sara’s story? Do you get unsolicited advice? How do you deal with it? Let us know in the comments below!

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.

Until Sunday,

Z.M

x

 

 

 

Awareness, Breastfeeding, children, chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, family, health, parenting, Rare Diseases, relationships, spoonies, tips

How ‘attachment parenting’ helped me with my chronic illness

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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

safe_sleep_7_leaflet-page-001

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

 

Awareness, chronic illness, chronic pain, Friday Feelings, Guest Posts, health, Rare Diseases, spoonies

Friday Feelings with Xo, Faith

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Hey there, hi there, ho there!

This week I spoke to Danielle from Xo, Faith. Danielle is SEO Manager and Freelance writer. She suffers from Sphincter of Oddi Dysfunction, this rare disorder can cause chronic pancreatitis. You can find Danielle on Twitter, Facebook and Instagram.

Danielle

“Yesterday is history; tomorrow is a mystery, and today is a gift, that is why it is called the present,” is my favorite quote of all time.

My name is Danielle Faith, and I run a peer to peer support magazine that aims to help those struggling with chronic pain, chronic illness, substance abuse and mental illness.

Being ill has been my inspiration to build and start my website. I make a huge point to note that my illness does not define me. I am a daughter, friend, blogger, social butterfly, dog lover, hard worker, college graduate, and so much more than my illness.

So now we know a little about Danielle, let’s have a read of her Friday Feelings entry

giphy

“Dear Diary,

While most people my age might grab drinks and dinner after work on Friday night, chances are I’m curled up under some warm blankets and heating pads that night watching the nightly news and browsing the internet. It doesn’t bother me; I enjoy what I do on Friday evening. It’s a nice way to unwind without worrying about my body or having to put myself under the microscope and go out.

“I’ve become comfortable with my illness. I know it well.”

I know when I can handle it at home, I need more medication and most importantly, I know when I need to go down to the dreaded emergency room. Currently, I’m averaging a monthly hospital visit and every three months I require a hospitalization. As bad as that sounds, it’s hard to imagine it once was a lot worse. It used to be that I was going weekly to the Emergency Room with hospitalisations every month.

As I progress, I have hopes and dreams. I want to go to school to study psychology, and I want to keep working on decreasing my hospital visits. I have a lot of supportive friends and family, and I want to find ways to give back to them to show them, that they’re important to me too.

I am fortunate that my friends and family view my illness in a positive manner. I can always rely on my family and friends to do right by me and for me that says a lot.

Today, I just want to live in the moment and not worry about the past or future.

I try hard to do this as much as possible. I’m in a ton of pain a lot of the time, but my friends, family, and dog, make it all better.”

A big thank you to Danielle for taking part in Friday Feelings blog.

I really enjoyed reading her diary entry and seeing her so positive. How about you? Do you relate to Danielle or feel inspired by her post? Let us know in the comments.

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.

Until Sunday,

Z.M

x

children, chronic illness, chronic pain, family, health, parenting, relationships, spoonies, tips

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

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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.

mom and child talking.jpeg

“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

chronic illness, Friday Feelings, Guest Posts, health, spoonies, tips

Friday Feelings with Living With POTS

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Hey there, hi there, ho there!

This week I spoke to Caroline from Living with PoTS . Caroline suffers from Postural Orthostatic Tachycardia Syndrome (PoTS). PoTS is a debilitating type of Dysautonomia and is often found in people with Ehlers Danlos Syndrome. You can find Caroline on Twitter.

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I’m Caroline, I’m a final year Uni student in Yorkshire, studying Psychology and Education. I love reading, especially Harry Potter, baking and crafting, and my dream is to live abroad and work with disadvantaged children.
I’m relatively new to both the chronic illness and blogging communities, having suffered with PoTS like symptoms all my life, but only just figuring out what it is. I’ve been amazed by how supportive everyone is.

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

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“Dear diary,

Friday night again, well 4pm. I’m in bed, exhausted from the week. Tonight is worse than most, Friday is food shop day, and dragging a week’s worth of stuff back on the bus means the pain is worse than usual. Later my flatmates will be going out, I’ll be lying in bed trying to sleep, constantly being woken up by them. Eventually I’ll probably give up and turn my laptop on. If it’s been a bad week, I’ll stick a DVD on, if it’s been a better week I might try get through some of the mountain of work I’ve been avoiding.

Right now I’m still getting used to my chronic illness. I’ve been suffering for years, but always just assumed I was lazy, or hadn’t eaten enough, or a million and one other excuses. Although having a reason is a relief, it’s scary. It’s here to stay and I need to learn to live with it. I’m sure one day I’ll know where I stand with it, I’ll have a diagnosis and a symptom management plan, and I’ll feel more in control, but that day is not yet.

The future is overwhelming. In July I’ll graduate, and have to enter the real world. I’ve always known what I wanted to do, I never even considered that I might be too ill to do it. So right now it’s back to the drawing board, desperately searching for a job I can do, without having to move away from the doctors I’ve only just met, who will be supportive of my illness. My degree has 3 contact hours a week, so I have no idea how I’ll cope with work, I don’t even know how I’ll cope making tea tonight, or having a shower. Long term planning is nothing short of impossible.

I wish people would stop telling me to be positive. I am positive. I’m also realistic. When I say this illness isn’t going away, it’s not. That’s a chronic condition. When I say it limits what I can do, it does. That doesn’t mean I’m not ambitious. I will find a job and a life that I love, it just won’t be what I was planning, but that’s okay. My condition is part of me, it does not define me.”

A big thank you to Caroline for reaching out to take part in our Friday Feelings blog.

Do you relate to Caroline’s entry? Do you constantly hear that you should be more positive from those around you? How do you deal with it? Comment below to offer some advice to this new Spoonie.

Want to write your own Friday Feeling entry?

Send

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A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

So until Sunday (I know, I know I said I’d have it up during the week),

Z.M

x

 

 

chronic illness, Ehlers Danlos Syndrome, family, health, Rare Diseases, recipes, tips

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

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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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Awareness, chronic illness, family, health, Rare Diseases, relationships, spoonies, Uncategorized

A letter to my fellow chronic illness sufferers.

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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

Awareness, children, chronic illness, Ehlers Danlos Syndrome, family, health, Rare Diseases, spoonies, Uncategorized

A Simple Guide to The Ehlers Danlos Syndromes

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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.

veds_type_poster3_2

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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