All posts by thezebramom

Mother of two amazing kids. A sufferer of Ehlers Danlos Syndrome, Autonomic Mediated syncope, Postural Orthostatic Tachycardia Syndrome and a whole host of other conditions. Loves to write about parenting and chronic illness.
chronic illness, chronic pain, disability, health, mental health, relationships, reviews, spoonies, tips

Healing Through Expressive Writing

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*I have been given this course free of charge as part of a review through the Chronic Illness Bloggers network. Although the course was a gift, all opinions in this review remain my own and I was in no way influenced by the company.*

Fellow chronic illness blogger, Esther who runs the blog  Life in Slow Motion offers three different courses for people with chronic pain.

Esther is a counsellor and writer. Her aim is to help people address the physical, spiritual, and emotional impact of chronic illness and pain.

I took up the offer of reviewing the 31 Days of  Expressive Writing of Expressive Writing for People with Chronic Illness and Pain.

The course aims to help reduce emotional stress, improve physical health and to help patients “find themselves again”.

Reduce Emotional Stress

“Writing that includes a high level of emotional disclosure can improve mood, reduce intrusive thoughts and anxiety, and increase your overall sense of well-being.”

Improve Physical Health

Research shows that expressive writing can reduce stress hormones, increase immune function, lower heart rate, and decrease physical pain.

Find Yourself Again

Expressive writing will help you process feelings and memories, gain insight and meaning, process spiritual issues, and set future goals and plans.

So, what is expressive writing?

Expressive writing is personal and emotional writing without regard to usual writing conventions, like spelling, punctuation etc. You must turn off your inner dictionary and thesaurus. Expressive writing simply expresses what is on your mind and in your heart.

Expressive writing pays more attention to feelings rather than the actual story itself.  But, like narrative writing, expressive writing can have a story. But often, expressive writing is difficult and unpredictable, and that is a perfectly normal. Expressive writing is not so much what happened as it is how you feel about what happened or is happening.

What does the Expressive Writing Course include?

The course is broken up into eight “chapters”.

-Introduction to Expressive Writing

-Your Story

-Your Grief and Emotions

-Your Faith

-Your relationships

-Your Strength, Joy and Hope

-Your Goals

-Final Thoughts.

Each day you are given an exercise or “prompt”, the exercises range in time but take no longer than 30 minutes each.

expressive writing

My Experience

The beauty of this course is that there is no deadline, you can do as much or as little of the course as you like in a day. This is ideal for people with chronic illnesses because, as we all know, there are days where we are simply not able to do anything but lie there and wait for our symptoms to ease. Of course then there is brain fog which makes us forget, like, everything!

Over the few days I did this course, I found myself to be in a far better head space than I have been in recent months. Just getting my feelings down on paper on a daily basis, was actually very liberating.

I learned a lot about myself during this course. There are a few particular exercises where you just write, not about anything in particular just wherever you mind takes you for those few minutes. When I read back what I wrote I realised just how much is on my mind, all the things I worry about sitting there on paper was a real eye opener. Interestingly, a lot of them were issues “normal” people would worry about like money, housework etc. Writing them down made them almost more manageable to conquer. That in retrospect, everything I worry about can be fixed, one way or another. Some may take more time and help than others but all in all, I have conquered much more difficult tasks.

Those types of exercises were my favourite and I will definitely continue to use this as a form of self therapy.

I also really enjoyed the more structured exercises such as writing about the experiences I had with the different stages of grief and looking back at all the milestones I achieved since diagnosis.

There are some exercises that are based on faith like reading through bible verses and analysing and applying it to your own experiences with chronic illness. I did skip these particular sections as they didn’t apply to me as someone who doesn’t practice religion.

I did go through the Faith section of the course and from what read, I think anyone who finds comfort in their faith would be fond of this particular aspect of the course. I think it would also be healing for somebody who is struggling with their faith.

There are some PDF attachments which you can download for particular exercises and I plan to use them for a chronic illness bullet journal I’m putting together.

Final Thoughts

The Expressive Writing Course is $39 which I think is a fairly reasonable price considering the course was put together by somebody who is a licensed Clinical Counsellor with a Master’s Degree in their field . It is really hard (at least here in Ireland) to find somebody who specialises in counselling for chronic illness. Waiting times for mental health services are also some of the worst in the world. I waited two years to get an appointment with a psychiatrist. I started this course just before my first appointment and I already felt much better in myself by the time I saw the doctor.

When you break it down to $1.20 a day for a researched based course, you are getting a a really good deal. Plus you can also redo the course if you so wish.

There are some parts of the course that you may not feel like doing (like me with the faith section) but it’s simply a case of taking what you want from the course and using it for your every day life.

While I haven’t seen an improvement in my physical health thus far, I feel that if I continue to practice the techniques I learned on this course that I will feel better equiped to deal with the daily battle that is chronic pain.

I would have liked if the work could have all been done on the one platform as an online journal rather switching back between word and the website. But that’s just personal preference.

Rating

4.5/5 

To see a full list of courses see https://lifeinslowmotion.thinkific.com/

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

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chronic illness, chronic pain, disabiliy, dysautonomia, Ehlers Danlos Syndrome, health, reviews, spoonies, tips

The Zebra Mom Trials-Pill Drill

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I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hey there, hi there, ho there!

So, I’m on a mission right now to find the best gadgets for “spoonies”. Things that make life bit easier can mean the difference between living a normal life and being bed bound. Last time we looked at the Oska Pulse which is a truly life changing device. However, there are some meds that I still need to take multiple times on a daily basis.

I am useless at remembering to take my meds. Brain fog has a lot to answer for that. So I could just set a reminder on my phone, right? Yeah, I could but I live in a house where the minute you set something down, it gets swallowed. Plus, when the alarm goes off, I usually just silence it and if I’m in the middle of doing something I say to myself “Yeah, I’ll get my meds there in a minute.” Then I forget and wonder why I’m in so much pain or feeling dizzy an hour or so later. This is where the Pill Drill comes in.

What is a Pill Drill and how does it work?

Wired.com have described the Pill Drill as  “the FitBit for taking medication”. I couldn’t agree more (not that I have a FitBit).

So the first thing you need to do is to set up the hub. The hub is the heart of your kit. Once you set it up in whichever room you tend to keep your meds, it will remind you when to take your meds and keep track of your intake.

Pill drill cover

Once you’ve taken your pills, you scan the pod from your weekly pill strip. Each pod has a built in scanning tag. The lids are very easy to open and close. Which is handy for people like me with weak hands so ensure you keep it out of reach of children.

The weekly pill strip comes with two pods for each day (e.g Monday 1 & Monday 2). If you take pills more than twice a day, you can order extra pill strips (RPP $29.95). The pill strip also comes with a strap to keep the pods secure while travelling.

In Ireland we generally don’t get medications in pill bottles but rather in boxes so I haven’t used the scanning tags myself. But, if you have pill bottles, you can attach scanning tags to them. You will receive 12 scanning tags (A-L). You can order an additional tag set should you need them (RPP $12.95).  They would also be helpful for items such as inhalers, injections eye drops or other irregular shaped items. The tags are can be placed in the three tag holders provided. More are available should you need them ($4.95).

In addition to scanning your pill pods, you can also scan your mood cube. The cube has five faces which displays a range of feelings you may experience on a day to day basis. These include: great, good, OK, bad and awful. The cube will register your mood and track health patterns over time. This cube is also especially handy for those who care for loved ones. If you’re not around, you can be notified in how the person taking the meds is feeling over the day. Once you scan, the carer/family member/loved one will be instantly notified. This is an optional feature.

The Pill Drill app syncs with your hub in real time. Here, you can edit and modify doses, receive reminders and log doses, receive adherence updates and track mood and symptoms. The app is totally optional.

My thoughts on the Pill Drill

I did have slight issues setting up the Pill Drill and connecting it to the WiFi. It didn’t take long for us to sort it out though. If you are not tech savvy you might need someone to give you a hand. The Pill Drill website does have an FAQ page to answer the majority of questions you may have in setting up.

Once everything was set up, it was pretty easy to use. I no longer forgot to take my pills and taking them at a scheduled time every day did improve my symptoms.

Each week my husband fills the pill pods (I find it very difficult getting pills out of their trays) which means I don’t have to spend five minutes fumbling around trying to get pills out each time I needed to take them. I do need to order a second set of pill strips as I take some meds up to four times a day. Pill Drill states that they ship to the US, Canada and Australia but you can contact them if you would like to order them in your country. I will use my addresspal (An Post) account to have the extra strips delivered to me.

The kids enjoy scanning the mood cube for me. I didn’t use the option of linking the Pill Drill to my carer but I do plan to do this as he is away for entire days every week or so. I really like the availability of this feature for those who do need caring for. It is reassuring to know that even if you’re not around, that you can make sure the patient is not putting themselves in danger or causing unnecessary symptoms by missing their meds. Knowing how their feeling is lovely too. If you get a notification that the patient is feeling very unwell, you can go to them/call them/doctor.

The app is really only needed if you need to modify dose and/or are out of the house and away from the hub. If you’re away from the hub, your phone will remind you to take your meds and you can log your dose so that you your adherence score stays consistent. I would recommend relying on scanning the pills on the hub rather than logging the dose on the app (if you’re at home) so that you’re not tempted in knocking off the alarm the hub makes. This is because you may forget or delay to take your meds. So if you’re home, use the hub as consistently as possible.

One thing that would make the Pill Drill even better is a feature to remind you to order more pills from your doctor and/or pharmacy. Since it tracks your in take already, I imagine it wouldn’t be difficult to incorporate such a feature. You might say you would know how many pills you have left seeing as you put them into the pill pods each week but if you suffer from brain fog, you live a busy life or someone else is filling your meds, you may forget to order a new script.

Product rating: 4/5

The Pill Drill Smart Medication Tracking System retails at $199.00 with a 30 day money back guarantee. The kit includes:

Pill Drill hub, 2 pill strips (Monday-Sunday x2), 12 scanning tags, 3 elastic tag holders and the mood cube. The app is available on the App Store (Apple) and Google Play (Android).

For more information about Pill Drill see the website or Facebook page.

Until next time,

Z.M

x

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Breastfeeding for the Chronically Ill-What you need to know

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Today sees the end of World Breastfeeding Week. In light of this here are a few nuggets of information for anyone with a chronic illness who would like to breastfeed. Sadly, there is a tonne of misinformation out there, especially this time of year.

The Zebra Mom

Breastfeeding has become such a touchy subject for the last few years and when ever it is discussed it inevitably becomes the breast vs bottle debate. Isn’t anybody else tired of this?! I blame the media (yes, I’m a journalist) because they have instigated ‘mommy wars’ in an attempt to generate more likes and followers on social media. I’m not here to debate ‘whether public breastfeeding is acceptable’ or ‘how long is too long?’ If you must know, I believe in breastfeeding to natural term which by the way, is anything up to 7 years of age. Will I feed a 7 year old myself? Probably not. Will I judge a mother who does? No. Her child, her business.

Anyway, this week I am offering some words of advice to chronically ill moms who wish to breastfeed or are thinking about breastfeeding. This is just touching on some points, if…

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Awareness, chronic illness, chronic pain, disabiliy, health, Uncategorized

No blue badge? No problem!

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Hey there, hi there, ho there!

So recently , I had the displeasure in confronting two “gentleman” in their work van who decided to it take it upon themselves in parking in one of the few accessible spaces in my town. This is a common occurrence in my town and well, all over Ireland really. Many people in my country have this sense of entitlement and have little regard for those of us who genuinely need these spaces. So, in light of my recent argument with the two blokes who decided to take up a space that I needed, I present you with some of the excuses I have been given over the years.

Please, take the accessible space if you only need it for two minutes

No, really it’s quite alright. I’ll just drive around and around until you decide to move. Honestly, it’s no problem. If I can’t find a space I’ll just take my walking stick and risk dislocating my pelvis. But I’m sure that’s not as inconvenient as it is for you to have to find a space and walk to your destination which is located 50 paces away. Heaven forbid you actually use the healthy body you’ve been blessed with for a minute or so. And no, I am not throwing daggers in your direction as we go around and around waiting for you to catch the hint. That look, is admiratiton, I swear.

dagger eyes

Please take the accessible space to make your delivery

Go right ahead, take that space to unload your delivery. I’m sure you won’t take several minutes to carry all those crates one at time into the restaurant/shop. Jesus, if you walked three more meters where the next space is, you loose the extra 10 seconds parking in the blue spot gave you. cvv Time is money, people. Time is money.

watch

Please take the accessible space to eat your lunch

You must be so famished, you poor thing. You couldn’t even make it outside the car park to stuff your face. What happened, were you in trapped down a well? Was there a food shortage in your village? You just sit there and eat your lunch while I struggle to get my wheelchair out of the car and try and avoid on coming cars. Your stomach comes first.

stuff your face

Please take the accessible space to avoid the rain

Are you related to the wicked witch of the west? Cause if so, you really should avoid the rain, I don’t blame you for not considering those with blue badges, you might melt! But just in case some pesky person with a disability takes the space before you do, let me introduce to you some very modern inventions. These items are revolutionary! The first one I call a coat (still working on the name). This amazing contraption is relatively cheap and protects you from the rain you fear so badly. Simply put your arms in the sleeves and zip up the front. Simple! Available in a variety of colours and fabrics.

The second innovative invention is even better when you pair it with the coat. Simply open the keepyoudry-o-matic (my people want to call it an umbrella but I don’t think it’s as catchy) and hold it over your head. Voila! You’re dry! Amazing, huh?

melting.gif

Please take the accessible space to collect your able bodied bodied friend

I mean, it makes sense, doesn’t it? You don’t want to fall out with a friend because you made them walk an extra 10 paces. That’s a deal breaker there. The secret to a long lasting friendship is laziness and a mutual disrespect for blue badge holders.

disrespect

Please take the accessible space to run in and “grab a few bits”.

No, no, no please go and do a full shop. Don’t rush yourself, after all your time is more important than mine. It’s not like I have hospital appointments, doctor appointments, trips to the pharmacy or my physiotherapist to see. It’s OK I’ll just hobble across the car park and that’s OK cause clearly the teabags and biscuits you need for your guests are so much more important than my health.

fake smile

Do you know anybody who does these things? Have you heard of more ridiculous excuses? Let me know in the comments!

Until next time,

Z.M

x

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

Friday Feelings with My EDS Journey

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Hey there, hi there, ho there!

This week I spoke to Emma from My EDS Journey. For a number of years Emma worked for a local charity helping people with disabilities but she has had to cut the number of hours that she can work dramatically as her condition, Ehlers Danlos Syndrome, has become unstable.

You can find Emma on Twitter, Facebook and Pinterest.

Miss clicky

“Hi everyone, my name is Emma I am 40 and I live in a very nice area of the south east of England. I suffer from hypermobile Ehlers Danlos Syndrome (hEDS).  This affects me in a number of ways, but mainly mobility, gastric, autonomic and pain are my problem areas.

My biggest passion is singing and I absolutely love musical theatre but unfortunately at the moment due to my current condition singing lessons and theatre visits are on hold! I took up blogging about 6 months ago as an outlet to communicate with others in a similar position to me and so we can share our knowledge and experiences living with a chronic condition. You can find my blog at http://edsjour.blogspot.com/edsjour.blogspot.com

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

giphy

Dear Diary,

Today is Friday, with most people I expect looking forward to a busy and varied weekend and perhaps socialising or spending time with friends and family.  For me however, this evening will be the same as any other, curled up watching TV or listening to music while trying to get comfortable.

My energy levels are currently very low and I am going through a bad period with my EDS, I wonder what my next problem will be as something new is always cropping up!

I like to take each day as it comes and not think too far ahead as my health is unpredictable and thinking about the future is scary and uncertain.

Due to the nature of EDS and it mainly being invisible to others, a lot of people don’t understand how it affects us, they may say “you are looking better today” or “ you need to keep up your exercises” as though these words are a magical cure.

I only wish they could see what is going on in the inside and then they would understand the phrase “make our invisible visible”.

A big thank you to Emma for taking part in Friday Feelings and being so open with us. Can you relate to Emma and her feelings of uncertainty about the future? Let us know in the comments below!

Want to write your own Friday Feelings 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 hello@thezebramom.com

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

Until Sunday,

 

Z.M

 

x

 

 

Awareness, chronic illness, health

Thank You, Chester.

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This week has been really tough for me.

On Thursday night I heard the news and broke down. A friend or a family member didn’t die. One of my saviours did.

Many moons ago, I was an angry teenager. I was angry at myself and at the world. As an adopted person, you ask so many questions. Why me? Why wasn’t I good enough to keep? In addition to the pain of abandonment, I always felt different. Something was never quite right. I couldn’t do things other people could. My frustrations came out as anger.

I felt alone and out of place, no matter who I was with.

At 16 I was on a path of self destruction, everyone was out to get me, or so I believed. The world was a crappy place and I was just surviving in it. I felt no one really cared and ignored the pain I was going through. Maybe they just didn’t see it. I don’t know.

I am not a creative person, I am not spectacular in anyway, I’m not talented at many things. I couldn’t throw myself into something to escape the pain.

I cut myself, I drank and I did things that were not good for me. Why wasn’t life as easy for me as it was for others, I thought to myself.

In 2000, I was just 13 years old. I was into all kinds of music. Nothing really spoke to me yet. That’s when I fell in love with rock and metal. Hybrid Theory was nothing I had ever heard. I began listening to Metallica, Smashing Pumpkins, Nirvana. I had been previously exposed to their music as a child but now, I appreciated it. Your music led me to some of those most amazing music that has ever graced the world.

But three years later when my pain was increasing (both physically and mentally), Linkin Park was the band I turned to. Hybrid Theory has been one of my all time favourite albums but it was Meteora that sang to me. In particular the songs ‘Somewhere I belong’ and ‘Numb’.

“I wanna feel what I’ve wanted all along, somewhere I belong.”

It’s as though you felt all the things I felt. For the first time in my life, someone was saying all the things I didn’t have the ability to put into words.

That song was on a loop, at full volume for months on end.

When I felt like dying, it was your music that calmed me. You were one of the reasons for pulling me out of that state. Seeing you play in the RDS while supporting Metallica was one of best days of my life. So not only did your music save me, you gave me great memories.

Now? Yeah, I still feel different, unspectacular and angry at the world but now I know that no matter what, music will always be there to pull me back as well the people who get me. I wouldn’t have known that if it was for your voice.

Even now, when my mental health is suffering, I know that even though you’re gone, you’ll still be there to sing what I’m feeling. Right now ‘Heavy’ is my go to song. I can’t help but cry when I listen to it, knowing how things ended.

So thank you Chester for giving us 17 years of your voice. Thank you for making us feel less alone. Thank you for putting into words the things I’ve always thought but couldn’t say. Thank you for creating music that speaks to millions of people who have felt the way I have felt. I have seen posts and talked to many people who were going through terrible times as teenagers. Even in the same school, none of us knew we were all going through stuff and all had the same thoughts and feelings. It just goes to show, you never know what goes on in people’s heads-even if you are in the same room.

I hope, wherever you are, you are at peace. Thank You again, for pulling me back. Your legacy will continue and I hope one day, my own children will find solace in your music when they’re feeling low, if they should feel unable to speak their minds aloud.

Forever Grateful,

Z.M

x

 

 

chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, health, Rare Diseases

Ridiculous things that injure people with Ehlers Danlos Syndrome

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Hey there, hi there, ho there!

Havin’ a bit of fun today with this tongue in cheek article. I was just thinking about all the things that can potentially hurt me-that wouldn’t hurt a “normal person.” The list was pretty funny so I thought I’d share them with you. I try and see the funny side of my illness. Nothing like a bit of comic relief!

Breathing

Breathing is vital to our survival. However, many people with Ehlers Danlos Syndrome suffer from a condition called Costrochronditis. It kind of feels like your having a heart attack and can make breathing very painful.

Eating

Again vital to our survival and yet, many of us have serious trouble with eating. Eating the wrong thing can cause pretty horrible side effects such as Tachycardia. If you suffer from Mast Cell Activation Disorder (MCAD), something you have been previously been able to eat all of a sudden causes an allergic reaction. Then there’s  Gut/Bowel Dysmotility and Gastroparesis…

Sleeping

Many people with EDS suffer from Chronic Fatigue. We will spend weeks sleeping like we are hibernating for the long night. Then there are weeks where we suffer with insomnia. Our sleep patterns tend to be all over the place and we tend to be night owls in general.

insomnia GIF

Drinking

I’m not talking specifically about alcohol here. No, even drinking a glass of water can cause issues. We do have difficulty swallowing so sometimes we will either cough and splutter while the water goes down. Then there are times when the water goes down the wrong way or even cause us to bloat so badly that we look pregnant. As for alcohol? Yeah….just no. Tachycardia, MCAD flare, nausea, vomiting, THE APOCALYPSE.

Moving

Moving is like an extreme sport to us. Even on our good days we are afraid to move for fear we might injure ourselves. We are clumsy AF so there’s a pretty solid chance we are going to walk into a wall/table, trip over ourselves or trip over literally nothing.

Exercise

laughing GIF.gif

Working

“God, it must be so great not having to work” *insert eye roll here* We would love to be able to work, some of us can and that’s brilliant for so many of us our working lives are over long before we even get our first grey hair. Being stuck at home is not all it’s cracked up to be, you know?

eyeroll GIF

Sex

Yep. Even sex can be detrimental to us Zebras. Ever dislocated a hip while having sex? Um…no…me neither…

Yawning

Yep, simply yawning can cause pain. Anybody with TMJ Dysfunction will know this.

You: “What was that?!”

Me: Oh just my jaw popping out of place.

You:

shock GIF

Stretching

You’ve finally managed to have a good night sleep, you wake up, have a lovely big stretch and then….POP, POP, POP, POP.

crispies gif.gif

Sneezing

See above.

Laughing

Side effects of laughing include:

Headaches

Dislocations/subluxations

Fatigue

Your funny bone may get tickled but it also might pop out of place.

Bathing

Yes, even bathing cause some pretty nasty symptoms such as our POTS and Hypotension to flare up. Do you really need to wash your hair today? Like, is it a special occasion?

faints giphy

Hobbies

I’m not talking about bungee jumping or horse riding here, people. I’m talking about sitting on your butt, watching TV and KNITTING. Yep, even knitting can cause an injury. Dislocated wrists will put you off knitting for life.

Taking our meds

Never mind the difficulty having to swallow giant pills or multiple pills. Most of us can do that dry after awhile but when the side effects make you feel worse than the symptoms you are actually treating, you know you have a problem.

The weather

Is it hot and humid? Pain in the muscles. Cold? Pain in the joints.

Have anything to add to my list? Let me know below!

Until next time,

Z.M

x

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chronic illness, chronic pain, dysautonomia, Ehlers Danlos Syndrome, health, reviews, spoonies, tips

The Zebra Mom Trials-Oska Pulse

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hey there, hi there, ho there!

I contacted Oska Wellness a few months back as I had heard about the Oska Pulse and had seen some reviews. I’ll be honest, I was skeptical. But, my curiosity and desperation got the better of me so I made contact with Steve Collins one of the founders of Oska Wellness. He requested a Skype call and what a call it was! I felt as though I was talking to a friend, we spoke about music, Ireland and his family heritage. We spoke about the device and I was carefully hopeful after hearing about some of Steve’s stories. Steve told me “be skeptical, but don’t be surprised if it works. You won’t even realise it’s working, one day you’ll find you’re doing something you haven’t been able to do for a long time”.

So, what is the Oska Pulse?

According to oskawellness.com:

“Oska Pulse mimics the body’s own recovery processes to relieve pain, muscle stiffness and inflammation, using optimized pulsed electromagnetic field technology (PEMF) to encourage recovery at a cellular level.” It is a first grade, FDA approved medical device.

What are Electro Magenetic Fields?

Sounds a bit Star Trek, right? Ok, so I’ll break it down a bit.

So first of all, I think it’s important to know what electromagnetic fields are and how important they are to our survival.

The Earth has it’s own electromagnetic field and without it, we wouldn’t be here. The Earth’s magnetosphere is a shield that protects us from the powerful solar winds given off by our sun. Without it, our atmosphere would be blown away out into space.

We all use this technology on a day to day basis. Our phones, microwaves and computer screens all emit electromagnetic fields.

So how does this technology work as a therapy?

PEMF therapy is applied by running an electrical current through a copper coil which creates an electromagnetic field.

This type of therapy is said to improve circulation. With improved circulation, your cells are in a much better condition allowing your body to heal more effectively.

Electromagnetic field therapy has been in use since the invention of electricity. It was widely adopted in East and Western Europe but its use was restricted to animals in North America until recently. Veterinarians became the first health professionals to use PEMF therapy, usually to heal broken legs in racehorses.

In 2004, a pulsed electromagnetic field system was approved by the FDA as an adjunct to cervical fusion surgery in patients at high risk for non-fusion. 

Although electricity’s potential to aid bone healing was reported as early as 1841, it was not until the mid-1950s that scientists seriously studied the subject.

Ok sounds great, right? But if you’re like me, you’ll want some hard core proof this technology works. So I did a bit of reading about PEMF. I read some articles and reviews and it gave me hope but, I was still a bit skeptical about whether it would work for Ehlers Danlos Syndrome. After all, it’s been noted as one of the most painful conditions.

So it arrived after a couple of weeks. I charged it for awhile and used it that evening. My science fanatic husband used an EMF detector on the device and sure enough, the Oska Puse was emitting electromagnetic pulses every few seconds.

A few weeks later my husband was refilling my Pill Drill and he called into me ” Babe?! You know you haven’t been taking your painkillers, right?”

I stopped and thought about it. Lo and behold I realised I was only taking two Tramadol in the morning. I had previously been taking the max dose (400mg per day).

I upped my use of the Oska to see if it would help my Dysautonomia symptoms as Steve had told me  a young woman with POTS had noticed an improvement with her symptoms. Once I upped my usage, I did notice a difference with my POTS symptoms.

The Zebra Mom Trials

So how do you use the Oska Pulse?

Please note that if you have a pace maker or internal defibrillator you will not be able to use the Oska Pulse.

The device is about as small as a phone and can easily fit into a pocket or handbag. A strap also comes in the package so you can simply strap it on to you as you get on with your day. I use mine first thing in the morning for an hour. I use it again in the afternoon for about 2 hours and then finally another 2 hours in the evening. You can use it while on the computer working, reading a book or even making the dinner.

Skeptics might say this device is producing a placebo effect but we were both skeptical from the beginning. I  went to my pain specialist just last week and told him about the Oska Pulse. He was in absolute agreement that this technology works and he was not surprised at all that the device was working for my chronic pain. This pain specialist has an amazing reputation and is highly regarded in his field here in Ireland so for him to believe in this product and technology, it says a lot. I know this isn’t a placebo effect.

I’m now thinking about possibly working outside of the home, something I haven’t done since 2012. I’m pushing my daughter on the swing and playing hide and seek with the kids. My day to day pain has all but vanished.

Now, of course no tablet or device is going to stop me from dislocating and stop the pain that goes with it. But knowing that the horrible day to day excruciating pain that I normally experience is not going to stop me from living my life, has given me hope. Once I start getting my injections into my hips and spine, I should hopefully be in a position to throw myself into physiotherapy. Getting myself strong should reduce dislocations so between the Oska Pulse, injections and physiotherapy, I will hopefully be able to go back to the old Evie who danced, played tennis, went horse riding and a social life.

The Oska Pulse has put in me in a position to start my recovery. I can start seeing the light between the trees. Not using pain killers has also made me feel more clear headed and the rebound pain I often get from using Tramadol has disappeared. Using Tramadol over a long period of time can have a number of pretty nasty side effects which I started noticing.

If you are like me living with chronic pain that has stopped you living your life, you should definitely try the Oska Pulse. You have nothing to loose. Oska Wellness offers a 90 day money back guarantee so if it doesn’t work for you, you can simply send it back.

Product rating: 5/5

If you would like to try the Oska Pulse and receive a $55 discount click the link here. Or you can use the coupon code 180387 at the checkout! For more information, see the Oska Wellness Facebook page.

Further reading:

http://www.news-medical.net/news/20170613/Clinical-study-suggests-Oska-Pulse-as-effective-method-to-reduce-pain.aspx

Pulsed Electromagnetic Field Therapy – Dr. Kathy Davis, PhD – May2017

OSKA-PainJournal with tables – no logo

Next time I’ll be reviewing the Pill Drill I mentioned above.

Until then,

Z.M

x

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Awareness, chronic illness, chronic pain, dysautonomia, health, Rare Diseases, spoonies

Autonomic Testing: What you need to know

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Hey there, hi there, ho there!

So a few weeks back I returned to London for some autonomic tests. While I was fairly prepared, there are a few things I would do differently. Even though I had been briefed by the investigations unit, I feel that some people who are due to have these tests would benefit from a few extra tips.

These are the tests that I had:

Autonomic Function Screening tests, plasma Catecholamine blood samples, head up tilt test (Autonomic Protocol), liquid meal test with autonomic responses, modified exercise test with autonomic responses to gravitational changes, cardiovascular autonomic responses to arm movements and a 24hr blood pressure monitoring using the autonomic protocol & analysis.

How do you prep for these tests?

Food and water

You have to refrain from any food four hours prior to testing and you can not drink anything until the lead up to the tests. So, I would recommend buying a breathe freshener spray as my mouth gets really stinky when I don’t drink water for awhile. So if that happens to you, you might want to bring some with you.

mouth spray

Luckily, my appointment was at 11am so I did have time to get up and eat something before we left. For 48 hours prior to testing you must refrain from eating anything with caffeine (coffee, tea, coca cola etc) bananas, chocolate, cocoa, citrus fruits & vanilla.

Clothing

You should wear loose fitting clothes for testing as the hospital informs, they suggested shorts in the documentation but London in spring is cold! I brought a few different things to wear and knew what would work for the second day of tests. What worked best was a loose t shirt (make sure the arms are loose or short too) and leggings. They only attach the vast array of wires and monitors on your upper body. The lowest they go is your hip area.

Medications

I wasn’t sure whether I should take my meds or not and it didn’t say what to do on the documentation so I refrained from taking my Midon but took my pain killers as the mornings are the worst time for me, pain wise. Luckily, I had booked a wheelchair to travel around London in so there was no chance that if I did faint, that I’d crack my head on the pavement. If you’re unsure yourself, give your investigation team a call or send an email to ask what to do in regards to your medications. It didn’t dawn on me until that morning on whether I should’ve taken my meds or not.

Punctuality

If you’re travelling abroad or far from where you live, make sure that you know which train/bus etc you need to get or what route you need to take if driving. I would advise for anyone having these tests in London, to check online whether there are any delays on the tube line you’re taking. I have a tube map app that was very useful for our trips around London. Give yourself plenty of time to travel. Be sure to get to the hospital in plenty of time so you can fill out any paperwork. Because we had the two kids with us, we did get delayed a bit so I was late for my tests but what we didn’t have time to do on the first day we did on the second.

How do these tests work?

Autonomic Function screening tests

This comprises of six tests. They are performed whilst you are lying flat, which will assess cardiovascular autonomic function.

The exercises vary in length, ranging from 15 seconds for the shortest and 3 minutes for the longest. The exercises examine blood pressure and heart changes in response to various stimuli: breathing exercises, cold, problem solving and isometric exercise. There
is a rest period between each test to ensure that your blood pressure and heart rate returns to baseline before commencing the next test. The autonomic function screening test also contains an active stand test. You will be asked to stand for a maximum of 5 minutes, whilst measuring your blood pressure and heart rate.
So, the breathing exercises were very straight forward. You are asked to breathe in deeply and then breathe out slowly for 15 seconds into a small tube. Then you’re asked to breathe quickly like you are hyperventilating.
The cold test was not pleasant at all. You’re asked to place your hand on an ice pack for 1.5 minutes. It doesn’t sound very long but trust me, it feels like forever. I won’t lie, it does hurt but as soon as that 1.5 minutes is up, you take your hand off and feel instant relief.
The problem solving test was tricky for me as I have a Dyspraxia diagnosis and people with this condition tend to perform very poorly when it comes to mathematics.
You’re asked to do fairly basic maths of adding and subtracting but when we got  to the big numbers, I ran into trouble. Plus the pressure of having to perform and brain fog thrown in, the odds were stacked against me but, they’re not measuring your math skills or intelligence, they want to see how your autonomic system reacts to these particular exercises.
Finally we did the isometric exercise test and this was simply having to squeeze a ball. With my weak hands and the wrists that are susceptible to dislocation, it was difficult for me but I was assured I did just fine by the lovely woman, Kiran who looked after me so well.
Plasma Catecholamine blood samples
Blood samples were taken from my arm using a small butterfly needle. Catecholamines / Metanephrines are a group of hormones (adrenaline, noradrenaline and dopamine) which circulate in the blood and help regulate blood pressure and heart rate. The levels of catecholamines/ Metanephrines in the blood changes with posture (the levels increase from lying to standing). Blood samples were taken while I was lying, following the 10 minute rest period, and while I was on the tilt table in the standing position.
On some occasions, a spot catecholamine/ Metanephrines blood sample is taken during testing. This usually occurs if the clinical autonomic scientist observes a sudden marked increase in blood pressure and / or heart rate which correlates to certain symptoms. This test is performed to determine whether there are any sudden increases in the catecholamine levels, which could explain the symptoms.

Tilt table test

A tilt table test is a non-invasive diagnostic test to determine whether your symptoms: dizziness, light headedness or loss of consciousness; are due to changes in the blood pressure and / or heart rate. At the  beginning of the test, you will be asked to lie flat on a table. Two straps are put around your body to hold you in
place. After about 10 – 15 minutes of lying flat, the table is then slowly tilted to raise your body to a head-up position – simulating a change in position from lying down to standing up. The table will then remain upright for
either a maximum of 9 or 45 minutes (maximum time depends on the test requested by the doctor), while your heart rate and blood pressure are monitored continuously. This allows doctors to evaluate your body’s cardiovascular response to the change in position.
Liquid meal test
This is a procedure that’s used to examine the effects of food on blood pressure (BP), heart rate (HR) and / or symptoms.
A liquid meal is used as the effects on BP and HR can be observed after a 45 minute period. Solid foods can take a lot longer to digest (up to 7 hours). There are two options for the liquid meal:
1) complan (original flavour) + glucose + milk
2) glucose + water
Most patients will have option 1 during the test. However, I had the glucose solution as I am lactose intolerant. It is so sweet, like sickly sweet. I would love my sweet treats but this was just gross. Both meal options are suitable for vegetarians and are gluten free.
So at during this test I was asked to lie flat on the examination couch for 10 minutes to get a baseline of my BP and HR. Then I had a tilt table test. Then I had to rest again until I was asked to drink the liquid meal. Then came by favourite bit, resting for 45 minutes. It was pure bliss, no noise, no lights, nobody crawling on me or calling for me every two minutes. It was every mother’s dream. I’m pretty sure I dosed off for awhile too.
During the 45 minute rest period, my BP and HR will be monitored continuously. During the 45 minutes however, my heart rate (HR) dropped very low. My usual HR is 80-90 BPM but mine dropped to 50 for awhile. The on call doctor was called to check my stats but no intervention was needed as my HR came up by itself. After 45 minutes, I had another tilt test to see if there have been any changes to BP and / or HR following the meal.
Modified exercise test
I was asked to lie flat on an examination couch for 10 minutes or until a baseline of
my BP and HR was established. I then stood for a about 2-3 minutes. I was then again asked to rest prior to performing the exercise. For the exercise, I cycled on a bike whilst lying flat.  It was tough but I needed to cycle at a continuous set speed, with the
resistance of the bike gradually increased over a set period of time. I performed the exercise as long as I could which was just 3 minutes. My knee and hips were giving out.
Following the exercise, I had yet another period of rest before standing again for 5
minutes. I couldn’t last that long either. My BP plummeted making me feel dizzy.
Cardiovascular autonomic responses to arm movements
 So I basically had to hold my arms out in front of me and then above my head for a few minutes. I think I only lasted a minute. My body has become so deconditioned that it physically hurt to hold my arms out in front of me. I could feel myself getting tachycardic during the tests.
 24hr blood pressure monitoring using the autonomic protocol & analysis.
I had to wear a small portable blood pressure monitor, which is on a belt and a blood pressure cuff, which was fitted to my upper left arm. The monitor will takes your blood pressure and heart rate every 20 minutes during the day and every hour during the night.
You are advised to continue with your normal activities, which will help to show your investigations team a typical profile of your blood pressure and heart rate during a 24 hour period. The monitor can be removed for a bath or shower during this period. I was also given a diary. The diary contains a list of extra activities that my team wanted me
to perform whilst wearing the monitor (these activities including measuring your blood pressure & heart rate responses to mild exercise, food and postural changes). I couldn’t do all of these activities as we were either out of the hotel, I was tending to the children or having a bath.
During the monitoring, you can eat and drink as normal prior to your appointment. Your doctor will advise you whether you need to stop any medication prior to and during testing.
 
After the testing, I did feel exhausted and a bit sick. Booking my wheelchair was the smartest thing I did in preparation for my trip.
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A couple of weeks later Prof Mathias spoke with me on the phone (this consult does cost extra on top of the couple of thousand pounds I paid for the tests) and I received a diagnosis of Postural Orthostatic Tachycardia Syndrome, Autonomic Mediated Syncope and my Orthostatic Intolerance/Hypotension was confirmed.
If you have any questions, you can comment below or message me on my Facebook page: The Zebra Mom
So until next week,
Z.M
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