Category Archives: Rare Diseases

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

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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.

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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?

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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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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

 

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

Disability and Social Media

Hey there, hi there, ho there!

Sorry for the radio silence, I had been in London again for tests and treatments and then I had some pretty bad issues with my neck. After almost two weeks and muscle relaxers, it’s finally under control. Interestingly, the muscle relaxers seemed to help my general widespread pain. I do have chronic tendinitis pretty much all over my body so obviously muscle relaxers would be helpful. Unfortunately my GP won’t allow me to have them long term in case I start sublimating and dislocating more often. Anyway, I’ll update you with London in next week’s post but I really wanted to get something off my chest this week.

How many of you out there have had people accuse you of faking your illness based on things you post on social media? It really can be a lose/lose situation for those of us with disabilities. If you post yourself getting out and having fun, you’re not that sick and if you post yourself lying in bed in pain, you’re attention seeking. If you do both? You’re not being consistent and therefore lying about your illness. It seems people are under the impression to be truly disabled, you have to be miserable, housebound 24/7 and silent. Out of sight, out of mind.

Recently I had the displeasure of being accused of faking my illness by a family member. Why? Because the wide range of photos on Facebook show my life for what it is; inconsistent.  Some days I am in my wheelchair and some days I socialise with friends. Anybody with a chronic illness knows that you have your good days and your bad days. When you do have your good days, you take advantage of them. I was told by said family member to get off the internet and “go for a long walk.” I’m sure some of you reading this are scoffing at the very idea. I was pleasantly surprised to see how many of my non spoonie friends stood up for me especially when the conversation got nasty. Funny thing is this person hasn’t seen me in five years, so it’s not like they have seen me at home contorted in pain with heat packs attached to me and medicated up to my eyeballs.

Disability and Social Media

I’m sure a lot of us with invisible conditions face these judgements and questions pretty regularly. Unless you live the spoonie life, you don’t know what it is like to be ridiculed and made to feel insecure simply by sharing your life, the good, the bad and the ugly.

For most, social media is a way to pass the time. It’s entertainment. But for those of us who do not have the luxury of having a vibrant social life, Facebook, Twitter, Snapchat etc are what keeps us connected to the world on a personal level. Have you been told you’re “always on Facebook”? Well, I don’t know about anyone else but many of my fellow spoonie friends also use Facebook to connect with loved ones. I scroll through my feed to check in on them and to see how other loved ones are doing since I am not able to get out and visit people as much as I would like to. Of course I do enjoy the entertainment aspect of social media, I like the Buzzfeed quizzes and the odd meme too. I am vocal about all aspects of healthcare and politics too. I’m a pretty opinionated person, I don’t think that should be frowned upon though.

Social media is a fantastic way to raise awareness of the various conditions that fall off the radar. Thanks to selfie campaigns and social media challenges like the ice bucket challenge for ALS (or my beloved REDS4VEDS campaign) the general public know more about diseases that previous generations may not have ever heard of. Even simply sharing a meme or infographic about a condition can educate thousands or possibly millions of people worldwide.

me good day:bad day

Posting our feelings about our condition or how the health system/Government let us down may come across as moaning or self pitying but for the majority of us, we just want to be heard. It is so frustrating to live in a country where there is an incredible lack of care (both senses of the word) and to witness the poor quality of life those with chronic conditions have. Again, when you’re isolated from the outside world, you don’t get to vent to someone in person, like most people do. We can’t just get up and leave the house to visit a friend for a cup of tea and get things off our chest. Most people ignore these posts, and you know they will but, you also know that your fellow spoonie friends will respond and be empathetic. Sometimes just seeing a comment saying “I hope you feel a bit better tomorrow,” can brighten up your day.

Posting a wheelchair selfie or a “good day” selfie doesn’t have any motive, we post photos without thought, just like everyone else. People post photos of themselves in the gym, or their food. What’s so wrong with us posting photos showing the complexity and inconsistency of our lives? Again, it’s about awareness. I think so many people are under the impression to be truly disabled, you must be missing a limb or in a wheelchair full time. As I’ve said, we do have our good days, they are far and few between and so on those days, we take photos and post. To be honest, most of the time it’s just a way to keep all the photos in one place. I also love when Facebook sends me a memories notification. I often get to see photos of a day I’ve completely forgotten about or a post of how ill I have been. I look back and see I’ve survived so far, and that can sometimes boost my motivation to keep fighting for recovery.

The thing about social media is it has given people the confidence to be cruel and rarely have to deal with the repercussions of their words because they post in the comfort of their own home. In reality, the majority of keyboard warriors wouldn’t say these things to your face. Also, these people forget they have the free will to scroll on by or unfollow someone if they don’t want to see “depressing” posts (yes, my life was too depressing for this lovely family member). There’s a plethora of posts on social media that aren’t to everyone’s liking or taste and most of us choose to either ignore them because it’s not worth loosing a friend or a family member over.

Anyway, I just wanted to get this off my chest because it is something that has been bothering me for awhile.

Until next time,

Z.M

 

 

 

How ‘attachment parenting’ helped me with my chronic illness

Hey there, hi there, ho there!

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

Attachment Parenting&Chronic Illness

So what is “Attachment Parenting”?

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

According to parenting science.com:

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

Attachment Parenting is often referred to as AP.

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

AP is associated with a number of practices, including:

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

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

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

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

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

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

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

Babywearing

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

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

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

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

Me sling

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

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

Marty fence BW

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

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

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

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

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

Marty Ollie

Breastfeeding on demand

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

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

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

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

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

BF OA

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

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

Cosleeping/Bedsharing

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

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

cosleeper

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

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

997034-the-gruffalos-child

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

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

Until next time,

Z.M

x

 

Friday Feelings with Xo, Faith

Hey there, hi there, ho there!

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

Danielle

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

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

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

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

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“Dear Diary,

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

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

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

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

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

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

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

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

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

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Until Sunday,

Z.M

x

Friday Feelings with Irish Dysautonomia Awareness

Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Lette
Lette and her baby, Boo.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

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

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“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting into weeks, melting into months that float by me at high speed and I still seem to be stuck here in my bed, in a dark room, feeling putrid!

Motivation seems to have upped and all but disappeared. I think of all the things I have achieved throughout my life before I got very sick and everything went downhill in 2011. I got my art degree, my Masters of science, worked as a fitness instructor, (can you imagine?) as a wedding and events photographer and videographer, as a teacher in adult education and as a lecturer in third level. That was just education and work, when I had the proper use of my legs and body, my husband and I used to just love going hiking through the wild woods and lakes of Killarney with the dog and cameras in toe, I loved to drive and cycle and swim and walk aimlessly through fields for hours with the camera just because I could and I felt immense joy in looking back at and sometimes editing the photos and the memories I had captured while out.

I used to love drawing, animals especially and now it has been so long since I lost myself in any art. I forget what it’s like and I miss it but the energy is never there in recent times for me to act on that longing.

I don’t do any of these things anymore, I find I am spending more and more time in bed as I am just not capable, the majority of the time, of being upright. Either I am in severe pain with my gut issues or severe pain in my hips and shoulder joints, or the worst pain at the moment is coming from the back of my head / base of my skull / top of my neck pain which causes white blinding headaches where I can do nothing but lie in a dark room and moan. No phone, no laptop, no reading, no entertainment. Just darkness and constant pain and nausea or POTS issues where my blood pressure is so low I can hardly turn over in the bed. It wears you down.

The only time I get out these days is not to visit friends or family like I used to regularly do, but instead to go to hospital and consultant appointments and even then I have to reschedule many because I am too ill to go!

I’m getting gloomy but I don’t mean to be, because something different happened yesterday. I had to update the house insurance! What? Bear with me! Honestly, it gave me a sense of purpose, for all of those 15 or so minutes I had something, relatively important, to do and it felt good!

This morning I helped make the breakfast with the husband, put laundry washing on, picked up the Nintendo DS for the first time in ages and played Earthbound and I even had a shower. This may sound utterly silly, but to me, these are huge achievements! The shower is a funny one, I actually have to way up my energy for the day against the effort of a shower and believe me, I may not have the energy for days. It can get a tad funkay in fairness!

So while many friends of mine will be going out on the town later tonight or this weekend and I know a few others who are jetting off on a few days holidays in Europe, all I can achieve is having a freshly washed dressing gown, a nice shower, fresh fluffy socks and a hot cup of tea! Where once I would have drowned my sorrows in that cup of tea, tonight I am smiling because I know its ‘the little things’ that should and do count the most.

I have so much to be happy for. My wonderful husband, our amazing dog, my loving family and friends, the generosity of strangers who have helped with my medical fund, a relatively successful blog and related social media links, my talents have gotten rusty but I can get them back if I just try even one new thing every day.

Anyone can achieve anything if they just try and thats alright with me!”

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

Do you relate to Lette’s entry? Do you find joy in achieving what most people would take for granted in being able to do? Comment below and let us know what you thought of Lette’s entry.

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.

So until Sunday

Z.M

x