Category Archives: chronic illness

The Zebra Mom Trials-Pill Drill

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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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

Friday Feelings with My EDS Journey

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:

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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

 

 

Ridiculous things that injure people with Ehlers Danlos Syndrome

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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The Zebra Mom Trials-Oska Pulse

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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Autonomic Testing: What you need to know

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
x
 

Friday Feelings with Zebra Writes

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:

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“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

 

 

 

Friday Feelings with Pain Pals Blog

Hey there, hi there, ho there!

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.

Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
bladder and reactive depression. You can find Claire on Twitter, Pinterest and Instagram. 
EDS - Claire pic 

“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was nursing and I trained and worked in various London hospitals, and then worked as a palliative care nurse in a local hospice – a fantastic, rewarding job that I loved. I was medically retired 9 years ago when my back gave up on me. Now I am kept busy with the family (more needy as young adults than they were as toddlers). 

I am a school governor at a local primary school, and I am about to become Chair of my old school’s friends’ committee. We keep old pupils in touch as well as arranging careers events for current pupils. I love meeting new people and interacting with the pupils at both schools. I love reading and belong to several book clubs, posting reviews on the blog, and when I can get there I love the cinema and streamed theatre live events.”

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

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“Dear Diary,

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. On a typical Friday night I will usually be found curled up in my PJs! How much of the evening meal I help with really depends upon what sort of day I have had and how fatigued I am. These days my hubby, Duncan is based at home with me, and in theory the kids can take over the kitchen duties but, it is usually like Piccadilly Circus as they come and go, leaving us to keep pace with who is eating or not! Some weeks I will try to join in with Spoonie Speak – a chat set up on Twitter for those of us who can’t go out, but like a chat in our PJs. Like lots of spoonies Netflix, Amazon & TV play a big part in my life but, this week I am actually going out on Friday for the leaving dinner of the current Chair of the friends committee.

I really want to go but do get a bit anxious about making arrangements in case I have a bad day, can’t go and let others down. Not to mention missing out.

My physical health has really deteriorated recently and since having a spinal cord stimulator implanted for the chronic pain, my POTS symptoms have really gone mad. I feel frustrated, tired and worn down  by the constant pain, fainting, dislocations, drug side effects, losing my independence, the uncertainty of how I will be from hour to hour and struggling to make plans. Something I really struggle with is the fatigue and the subsequent guilt at needing to rest. On a beautiful day I can’t stand not being to jump up and just go for a walk in the park.

Some days I feel like I am constantly saying sorry for needing help to have a shower, for fainting, for being unable to cook, for being pushed in the wheelchair, even for not being able to lift the iron.

I try not to think too hard about the future for me – on bad days I can’t think about living with the pain, particularly the chronic back and leg pain, for another week let alone another 40 years! Sounds dramatic but that is how it feels. I also know that there is very little that can be done for the extreme joint pain – I have been told I need shoulder and hip replacements, but that it isn’t possible because of the dislocations and I’m still too young.

I don’t want to “give in” to the illness any more than I have to. Sometimes this is easier said than done – and at times the future feels uncertain.

But I do tend to do what I can when I can and probably don’t pace. I want to keep as active as I can for as long as I can, but the severity of POTS symptoms this last 6 months has left me feeling really low and really ill. Hopefully the different consultants can sort me enough to get me back on an even keel – but the lack of “shared” care is frustrating; repeating the same story over and over, no one knowing what other specialities are doing!

What does worry me for the future is the kids – the younger two anyway. The 18 year old has bad and frequent migraines, with neck pain, hand and arm pain. The youngest is now subluxating and dislocating, has daily pain in joints, can’t hold a pen in a normal grip, writes slowly and has pain. All 3 are dizzy on standing and lose vision – and all three are overly anxious. Two have had counselling, one self harms, one is on anti depressants, we are well acquainted with CAMHS!

I do accept that hardly anyone will have heard of EDS and have got used to suggestions of having collagen injections but what is tougher is the lack of understanding about what chronic illness means. No, I won’t get better. It is genetic so no there is no cure, not even for the kids! I feel that I have to justify myself for being tired, cancelling plans, etc. I hate having to ask for help and would love it if friends would just remember that I can no longer drive and offer a lift without me having to ask. Some people can’t understand why I use a wheelchair when I can stand and walk – pain is invisible, as are the implants in my back, and damage to my joints, but these are what making standing up and walking a near impossibility some days. I feel that other people’s lives are so busy and that I should be fitting in with them, after all I’m at home all day.

It is frustrating when I’m told how well I look and this happens when I’ve put on some lippie and blusher.

You don’t see me at my worst because I can’t actually get out of the house then! But I would probably rather people think I’m putting best foot forward and being positive – chronic illness doesn’t stop you wanting to look good, go out, have a laugh; even if you can’t always actually do this.”

 A big thank you to Claire for taking part in Friday Feelings and being so open with us. Can you relate to Claire? Do you feel guilty not being able to perform certain tasks? 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

 

Is gender bias affecting women’s medical treatment? The Zebra Mom investigates.

Hey there, hi there, ho there!

So for awhile now I’ve been thinking about writing this piece as I’ve heard a lot of anecdotes about sexism and gender bias in medicine. I know myself that I’ve experienced some sexism in my time as a regular visitor to the GP and hospital.

The definition of bias: inclination or prejudice for or against one person or group, especially in a way considered to be unfair.

“When we talk about gender bias in medicine we usually either mean an unintended, but systematic neglect of either women or men, stereotyped preconceptions about the health, behavior, experiences, needs, wishes and so on, of men and women, or neglect of gender issues relevant to the topic of interest.”-Gender Bias in Medicine; Katarina Hamberg

I think the experience of sexism and gender bias that stands out to me the most, personally, is the time I went to my GP explaining I had zero libido, that it was borderline painful to have sex and that it was affecting my relationships.

The GP (who by the way was a woman) told me to just do itthat the more sex I had, the more I would want it.  Now I don’t know if I am off the mark here but I’m sure if a man went to his GP and told them that they had no libido or that it hurt to have sex that they wouldn’t be told to “just do it”.

Now, I’m not a doctor but I think I if I was, that I would at least do some blood work and if nothing showed up, refer the patient on to a Gynaecologist/Urologist for further investigation. Or you know, have a look down there to see if anything obvious stands out!

So, I wondered if there was solid, scientific evidence to suggest whether gender bias actually exists in the medical field. I have been told hundreds of stories over the years as a health journalist about women being fobbed off. Sadly, this treatment has cost women their lives.

I recently spoke at a conference in Manchester and while I was there I spoke to a GP who also suffers from hypermobile Ehlers Danlos Syndrome. When I brought the subject up of whether women’s pain is taken as seriously as men’s; she responded: “Absolutely. It’s a feminist issue, for sure.”

Of course, we can’t go on anecdotal evidence. To prove something actually happens we must look at it from a scientific point of view. I contacted the amazing Gill Roddie (follow her on Snapchat: gemeroodles) to ask her for solid articles about this issue. Gill teaches Biology in third level and is a wealth of knowledge when it comes to science. Her science snaps are definitely worth the watch, so do check her out.

Does the research show that women’s pain isn’t taken as seriously as men’s? Yes, it does.

gender bias in medicine

It’s a disturbing thought, but there is a plethora of mounting evidence to back up these anecdotes. Women’s pain is taken much less seriously by doctors than men’s, fact.

This gender bias has a number of serious implications; including that women in acute and chronic pain are left to suffer for longer in hospitals. Women are more likely to be misdiagnosed with mental health problems because women are emotional” even when clinical results show their pain is very real.

Research has found that when women and men present in A&E with the same severity of abdominal pain, men wait an average of 49 minutes before being treated, while the average wait for women is 65 minutes. Similarly, women are consistently prescribed less pain-relieving medication, even when controls for weight are applied.

One reason for this blatant display of sexism may be that doctors often perceive women are being more irrational or emotional than men, and therefore see their complaints about pain as being ‘all in their head’ rather than having a physical basis.

Clinical studies have also found that doctors are more likely to think women’s pain is caused by emotional issues rather than physical causes, even in the presence of clinical tests which show their pain is real. Researchers J.Crook and E.Tunks found in their study ‘Women With Pain’ that women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and often prescribed psychotropic drugs, as doctors regularly dismiss symptoms as being a part of a mental illness.

I myself can back this up, again with anecdotal evidence. When I first went to my GP about my symptoms of pain and fatigue, I was told that I was depressed. Another GP told me my chest pains were caused by stress. I told him I wasn’t stressed at all and he said “Oh, well it must be subconscious stress.” Again, no investigations, just a script for Lexapro. We now know that my pain and fatigue symptoms were a result of my Ehlers Danlos Syndrome and the chest pain is either a subluxated rib or costrochronditis.

But this assumption also does no favours for the male population either. Men are seen as more rational and when they say they are feeling acute pain, doctors take their symptoms seriously as having physical cause rather than assuming an emotional basis. But what if it is emotional?

A 1990 study by Karen Calderone from Rhode Island University indicated that women are more likely to be given sedatives for pain, while men are given pain medication.

This indicates that women are perceived as being more ‘anxious’ than truly in pain.  This research suggests that doctors focus on returning women to a ‘calm and rational’ state rather than actually relieving their pain.

This means women are often left in severe pain for longer periods than men. Sedatives can make women appear calmer but all the while continuing to feel pain acutely. This means they stay in extreme discomfort for longer periods and this can lead to serious symptoms. Conditions may go unnoticed and undiagnosed through this type of medical treatment (or lack their of).

In Hamberg’s paper she noted that in a large variety of conditions, such as coronary artery disease, Parkinson’s disease, irritable bowel syndrome, neck pain, and knee joint arthrosis, men are investigated and treated more extensively than women with the same severity of symptoms.

Personally the most disturbing thing I’ve read during my research for this article is learning that the more attractive a health care professional found their patient, the less treatment they received. This confirms what most patients with invisible conditions say, that their pain isn’t taken as seriously because we appear healthy.

In the research paper ‘Beautiful Faces in Pain’ it was found that due to this “beautiful is healthy” stereotype, doctors assume people who look ‘better’ on the outside, are healthier and subsequently require less treatment. Since sexism and patriarchy is present when it comes to hierarchy in hospital settings, men are more than likely to have senior positions. They are responsible for decision making and since the majority of men are heterosexual, it seems quite possible that women’s pain is underestimated due to the perceived attractiveness by the males responsible for their treatment.

While I’m sure most health care professionals will say that they treat each patient with the same level of care, regardless of their gender, the facts and figures say differently.

You can not deny the solid, scientific facts that show that gender bias is very real in medicine.

Sexism is seen in A&E waiting rooms and hospital wards. Gender bias and sexism is present in almost every area of society, so why would medicine be any different?

Gender bias is literally physically hurting women as well as emotionally. Imagine if those chest pains I was suffering from was something more sinister? What if it was my heart giving me a warning sign? What if I ended up in cardiac arrest? I may be presenting you with hypothetical situations here but, for many women, this has happened and sadly, it has cost them their lives. Until gender bias and sexism is rectified in medicine, women will continue to face difficulty in accessing appropriate treatment.

Until next time,

Z.M

x

Friday Feelings with Hospital Princess

Hey there, hi there, ho there! Apologies for the radio silence and the delay in posting this week’s Friday Feelings guest post. I’ve had a crazy few weeks which I will explain in due course.

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Cheyenne from Hospital Princess. The 20-year-old is currently studying in college. Her goal is to become a Christian counsellor and to specialise in chronic and terminal illnesses. Cheyenne suffers from Hypermobile Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Dysautonomia and Gastroparesis. You can find Cheyenne on Facebook, Twitter, Instagram, YouTube and even on Etsy!

Cheyanne

“My name is Cheyanne. I am 20 years old. South Carolina is my is currently home; however, my heart is native to sunny Florida. I am blessedto do life with my family, wonderful partner of four years, and my red-headed smushed faced cat named Weasley. I am a college student at North Greenville University. 

Chances are, I always have a book or Kindle in my hands. Vegan baking for others, despite being tube fed unable to eat, is another enjoyablepastime. Similar to most, social media, binge watching Netflix or Hulu, and technology all consume a large chunk of my leisure time. And I recently transformed my grandma-like hobbies of knitting and sewing into a mini Etsy business selling handmade items.”

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

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“Dear Diary,

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. My weekend with chronic illness involves the total opposite of the drunken, wild parties usually experienced by other college twenty-somethings. Alcohol via a J tube is never a practical idea. Instead, my Friday nights are spent with family and close friends playing board games, chatting, binge watching Netflix, or even the odd spur of the moment road trip.

I feel kind of defeated in terms of my illness. Treatment is limited. Since I am already relying on last resort options like tube feedings, TPN (IV Nutrition), and a continuous infusion of IV Benadryl for Mast Cell Disease, it is as if I am perpetually trapped in the ‘what do I do now’ stage. There is hope for better days ahead though.

The future is obscure, clouded with the unknowns of chronic illness.

I have no clue what the future holds, nor will I try to pretend that I do. Any conceivable plan I have had for the future has not resulted in the outcome I ever expected. Overall, I am thankful for each day I have left to continue to pursue God’s will for my life.

Outsiders inevitably have a different perspective towards my illness. The diagnoses are tremendously misunderstood.

Because they are mostly ‘invisible’ illnesses, people neglect to consider how widespread the symptoms actually are.

Only awareness can reduce the stigma and make others recognize the seriousness of Ehlers Danlos Syndrome, Mast Cell Disease, and the remaining comorbid conditions.”

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

 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 tomorrow,

Z.M

x