Category Archives: chronic illness

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

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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

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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

 

 

 

The Zebra Mom in the News

Hey there, hi there, ho there!

So this week’s blog is coming a little early because we are flying off to London tomorrow. This week has been very tough on me because my legs have become so weak that I can not stand up without help. I am on day two of a migraine and nausea too. So driving 3 hours up to Dublin and flying to the UK is going to be very hard on me. This will my third trip in a year going over to London for treatment and testing.

This trip I am having autonomic testing and physiotherapy. The children are also going to see their physio on this trip.

The last couple of weeks have been mental though. We have been on three newspapers, another on the way and I have been on the radio too talking about the lack of care in Ireland for patients with EDS. I am also lobbying for medical cannabis to be granted for those with chronic pain. I found out just yesterday that one of the newspaper articles below was read out in the Dail (Irish Government building) during a presentation about medical cannabis. Apparently my story of just wanting to be better for my children moved a lot of people. Medical cannabis could make that a reality.

The Zebra Mom in the News

Article from The Southern Star by Kieran O’Mahony

‘I’m left helpless to ease their pain’ says Clon dad in bid to get UK treatment

Echo photo

A CLONAKILTY man who says it pains him to see his wife and two young children suffer from a cureless condition, has set up a funding page to help them access treatment abroad.

Martin Nevin set up a GoFundMe page for his wife Evie (30) and their two children Alexander (7) and Olivia (2) who suffer from Hypermobile Ehlers Danloe Syndrome (EDS) and Dysautonomia.

The chronic, multi-systemic conditions have left his wife and children susceptible to joint dislocations and chronic pain and fatigue, as well as many other issues which can severely affect their standard of living.

In a poignant post on the page, Martin outlined why he set it up.

‘It pains me to see these three fantastic people suffer, to watch a woman with so much talent restricted from sharing it with the world, to see a boy with the will to climb a mountain withdraw from fatigue and to see the sweetest and the happiest little girl ever cry with agony due to dislocated joints.’

‘I can do nothing but watch their symptoms flare up. I’m left helpless to ease them and that is why I’ve set this page up so my family can get the treatment they need,’ said Martin.

Although the condition is slowly being recognised here, there are no specialists or facilities in the country to help sufferers, leaving the Nevins with no choice but to seek treatment abroad.

‘The Ehlers Danlos Syndromes are a group of connective tissue disorders which cause the body to produce faulty collagen and collagen is the glue that holds our bodies together. We are also affected by Dysautonomia, which means out autonomic systems don’t work properly. While Alexander and Olivia are not very affected by this condition, it does affect me and it can cause me to faint by simply cooking dinner,’ Evie told The Southern Star.

Evie and Martin have been told by the HSE that there are no plans to help patients with EDS in Ireland, so they are looking to London for treatment. ‘It’s a little too late for me now, as my body was neglected for almost 30 years, but the children are lucky to have been diagnosed so early,’ explained Evie. ‘So with help in the UK, we hope that they won’t become as affected as me.’

Evie said she is almost house-bound seven days a week, and she has been unable to work for several years due to her condition.

‘We want to give our children the best possible chance at a normal life and it’s really only now that I am getting tests and treatments for myself.

‘While we look to getting treatment abroad, we’ve been told that the Treatment Abroad Scheme won’t cover the costs to the UK, because our doctors are private consultants and the Cross Border Directive won’t cover our tests because they need to also be available in Ireland, which they are not.’

Evie and Martin also received another big blow with the recent announcement that chronic pain won’t fall under the Medicinal Cannabis Bill.

‘Medicinal Cannabis is often recommended for EDS patients in the US because patients are often resistant to pain medications, particularly opiate-based pain killers,’ added Evie.

Evie herself has been working tirelessly to get this condition recognised in Ireland and has written extensively on this for many newspapers and journals, as well as spearheading a campaign for all EDS sufferers.

The family recently attended the Hospital of St John and St Elizabeth in London where they met with professors who specialise in EDS and Autonomic Dysfunctions.

‘We have had to break up the trips over to London which is more expensive, so every time we go back they add on other tests and consultancies, so we are going to be fundraising for the foreseeable future.’

The family have set up a Go Fund Me page to raise the vital funds to avail of the treatment in London and they and their friends have already been fundraising by holding events in Clonakilty.

See www.gofundme.com/2befu24c or see ‘The Nevin Family Treatment Fund’ on Facebook.

Interview on C103’s Today show

Play from 56:20 to hear my interview below

https://soundcloud.com/cork103/corktoday-4th-april-2017

 

Article on The Irish Examiner by Sarah Slater

Cork family pleads for help to battle rare illness

A young mother and her two children are battling an illness that is consuming all of their short lives.

Nevin Family

Evie Nevin, aged 30, her son Alexander, 7, and daughter Olivia, 2, have the rare and debilitating condition, hypermobile Ehlers-Danlos syndrome (EDS).

Although EDS is slowly becoming more widely known in Ireland, there are no specialists or facilities in the country to help people with this condition.

There is no cure for EDS, but with careful management and specialised physiotherapy the quality of living for someone with EDS can be improved.

Most Irish EDS sufferers are referred to Rodney Grahame, consultant rheumatologist at the Hospital of St John and St Elizabeth, London, who has said: “No other disease in the history of modern medicine has been neglected in such a way as EDS.”

Members of the EDS community have campaigned for specialist treatment here, to no avail. They recently learned that there are no plans by the Government or health services to implement any.

Evie, from Clonakilty, Co Cork, is prone to hip and wrist dislocations on almost a weekly basis. She is extremely effected by changes to pressure and can be left bed-ridden with pain from something as small as a rain shower.

I went from getting up at 6.30am and getting home at 9pm working as a journalist in 2012 to being someone just existing in 2013,” she explains.

“I remember being very self-conscious all the time because I rarely had the energy to get dressed and people only really saw me in my pyjamas. I got called lazy a lot. That hurt. I didn’t know what was wrong with me, but I knew it wasn’t laziness.

“When Alex was diagnosed my heart broke. I felt so guilty. My genes did this to him but, thankfully, I’ve moved past that now because what’s the point in feeling guilty? He’s lucky that he has been diagnosed so young and that he has an excellent school who support him by providing resource hours, an SNA and movement breaks.

“It was confirmed for me before Olivia was born. I felt her skin and saw the hint of blue in the whites of her eyes when she was born.

“My heart goes out to Martin. He didn’t ask for this at all. When we first met I was still relatively ‘normal’.”

Evie’s husband Martin, 29, has thrown himself into fundraising to get his family the specialist treatment they need, as well as being a videographer. He’s also determined to keep their spirits up.

“I feel like such a burden to him, but he never makes me feel like that,” says Evie. “Even on days when I’m in agony and not so pleasant in my manner, he doesn’t complain. He has never once made me feel bad for being sick or for the kids inheriting my genes. It’s all down to me and my issues.

“He took his ‘in sickness and in health’ vow very seriously! He’s a brilliant dad and husband and treats us when he can so we have things to look forward to. When you’re stuck at home six days out of the week, most weeks, looking at the same four walls, you need something to keep you looking forward.”

For now, the focus is on fundraising, but the Nevins are facing the fact that they may have to emigrate to properly deal with the condition. They have been told they cannot access either the Treatment Abroad Scheme (TAS) or the Cross-Border Directive (CBD).

“The TAS only covers treatments available on the NHS,” says Evie.

“The Hypermobility Unit in St John’s and St Elizabeth’s in London is a private hospital so our consultancies and treatments won’t be covered.

“The CBD will only cover medical issues that are also available here in Ireland and the tests and scans I must have in London are not available in Ireland.”

In a statement, the HSE said: “EDS is treated across Europe by multidisciplinary teams, often led by physiotherapists, with extreme cases being sent to orthopaedic for corrective surgery. EDS is readily treated in Ireland by physiotherapists. There is no specialist centre in Europe or the UK.”

Evie refutes this: “There is no treatment available here, no matter what they say. The people in charge will say rehab in Harold’s Cross is an option, but they are in no way experts and the reviews from my community haven’t filled me with any confidence that they could take care of me and my complex conditions.

“Right now, we are aiming to move abroad somewhere where there is better care and where the air pressures are more stable than Ireland. The kids are becoming affected by the pressure changes too. Both of them wake in pain when we have particularly nasty weather.

“Obviously I can’t blame the Government for the weather, but I do blame them for not setting up a clinic for people with connective tissue disorders.

“We need somewhere with a multi-disciplinary team like in London. We need consultants that communicate with each other. Things slip through the cracks because of the lack of communication and a holistic approach.”

One development that could make a huge difference to the family’s lives is medicinal cannabis. Those with EDS are often resistant to pain medications and they find it difficult to manage their pain. Medical cannabis is recommended for EDS patients in the US.

There is an increasing call by medical support organisations for greater access to medicinal cannabis for patients with debilitating conditions.

A Health Products Regulatory Authority report published last month advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with three conditions — spasticity associated with multiple sclerosis; intractable nausea and vomiting associated with chemotherapy; and severe, treatment-resistant epilepsy that has failed to respond to standard anticonvulsant medications.

“When health minister Simon Harris announced that only three conditions would be approved, none of which are related to chronic pain, I was devastated,” says Evie. “I had been hopeful and excited at the idea of having some normality back in my life.

“Medical cannabis could be seriously life-changing for my family and me. In the US, EDS experts highly recommend cannabis as a form of pain relief as many patients are resistant to painkillers, specifically opiate-based pain medications.

“I have changed pain medications so many times because I’ve become resistant pretty quickly to them. This is now starting to happen with my current medication, Tramadol.

“I’d rather have medical cannabis over my Tramadol because taking 5,000 painkillers a year can have serious repercussions on my body. If I can access cannabis safely and with help from the HSE, I may not develop symptoms of long-term opiate use such as depression, hormonal dysfunction, and respiratory depression, to name just a few.

“I have used cannabis-based products to manage my symptoms. I use a MediPen, which has been helpful for my chronic fatigue, but not for my pain. I have smoked cannabis and I find that, on days when my Tramadol isn’t working, it’s the only thing that helps manage the pain.

“I also find it good for my appetite because I don’t eat a lot when I’m in a lot of pain. I’m so nauseas and I find Tramadol suppresses my appetite sometimes. There are days I’d be lucky to get 800 calories into me. I would like to be able to access cannabis legally so that I can function a bit better in my day-to-day life and be a better mother and wife to my family.”

For now, another round of tests and physiotherapy for Evie, Alexander, and Olivia at St John’s and St Elizabeth hospital in London, as well as flights, accommodation, and private medical consultations in Ireland, mean the young family need to raise in the region of €10,000 for the first trip.

Martin says: “It pains me to see my family suffer. I can do nothing but watch when their symptoms flare up. I’m left helpless.

“So I’m asking the public for their help, as a father and as a husband, to send my family to get the treatment they need. Anything you can spare, even a few euro, will make a massive difference.”

You can find out more on their GoFundMe page, or on Facebook.

The symptoms

Ehlers-Danlos syndrome is a genetic connective tissue disorder that affects the joints, skin, and blood vessel walls.

Sufferers usually have overly flexible joints and stretchy, fragile skin. This can become a problem if a wound requires stitches.

There are 13 types of The Ehlers Danlos Syndromes and symptoms vary.

Overly flexible joints can result in dislocations and early-onset arthritis. Fragile skin may develop prominent scarring. Those with the vascular disorder are at risk of often-fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, may also rupture. Pregnancy can increase these risks.

In other forms of the disorder, fainting and low blood pressure occurs because blood vessels stretch. Stomach wall lining is fragile and bowel ruptures can occur. Constipation and other motility (movement) disorders feature, as does gastroparesis (paralysis of stomach; inability to process food).

Excessively loose joints are the hallmark of hypermobility disorder as suffered by Evie, Alexander, and Olivia. Large joints and small joints are affected. Partial and total joint dislocations are common. Many experience chronic limb and joint pain.

ENDS

It has been a crazy couple of weeks and thanks to these journalists, we have reached our first goal of 10,000 Euro! When the Irish Examiner piece came out over 2,000 was raised in that day alone. I am truly blown away by stranger’s generosity and kindness.

Another good thing that came out of all of this is that I have had parents from all over the country ring me to ask for advice regarding their children. Sadly, and also not surprisingly, many families are given diagnosis but then offered no support or solutions. In Ireland we have to fight for every support we get. This is no country for disabled people. The entire health system is lacking in every sector.

Standing up and speaking out does work. You just got to keep chipping away at the block. I truly believe my story has made a difference in regards to awareness and lobbying for medicinal cannabis.

Next on our press list is an article with the Evening Echo. We hope that some more newspapers, radio stations and TV stations get in touch. Not so that we can fundraise, but to raise awareness and give chronic pain patients a voice.

Until next week,

Z.M

 

 

Friday Feelings- Living with ME

Hey there, hi there, ho there!

This week I spoke to Amy from Living with ME. Amy is a university student studying English and Linguistics. Amy suffers from Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). You can find Amy on Twitter, Facebook, Instagram and Pinterest.

Amy

Hello! I’m Amy Saunders and I have a blog called Living with ME which is basically a lifestyle blog, focusing on chronic illness. I have ME/CFS, (chronic fatigue syndrome) and potentially an underactive thyroid as well. I am a student at university, studying English Language and Linguistics, and in my spare time (when I’m not sleeping/resting!) I love reading, singing, and writing!

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

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“Dear Diary

For the past few weeks, my Friday night has been spent being in bed by 8pm, with a hot water bottle and a big soaps catch up. Usually after a busy week, I am ready to collapse and I use my Friday nights to rest and unwind from a chaotic week, and I usually love doing that. It’s time that I get to myself to do what I want to do, whether that be watching my favourite TV show, doing some blogging, or just reading a book. Occasionally, if I’ve had a quieter week, I might go out for a few drinks with friends, or a meal, but on the whole, I’m usually in bed, and that’s just the way I like it.

I’m currently recovering from a bit of a flare up from my illness which hit me in March, along with a side of anxiety and a bit of depression, so time to myself is so special to me, and so important for my health.

I am comfortable enough with my illness to know my limits, but whenever a flare up arrives, it is bound to hit you hard, no matter how bad the flare is.

March was a bad month, and that’s never going to change, but what is important is that I persevered and I got through it. It’s now time for me to reflect and look back at it and work out if there was a trigger, something that caused it, so I can learn from it and prepare for the future.

I don’t know what’s going to happen in the future. Will I get better? Will I get worse? Or will I just stay the same?

I have all these big life decisions that I have to start making over the next year or so, and to be quite honest, I don’t have a clue what I’m going to do.

It’s hard to try and explain this to people. I’m at university, so naturally people are always asking me what I want to do once I’ve finished. My gut tells me to be honest and say ‘I don’t know’, but my head tells me to lie and say ‘Oh I want to be a teacher’. I mean, that is the truth isn’t it? I do want to be a teacher. I know it’s not realistic and it most likely won’t happen, but it is the truth, right?

I don’t expect anyone to understand what it feels like to live with a chronic illness at 21 years old, but it would be nice from them to try.

But for now, I live for the present moment. I try not to think about the future, and the big decisions that I’m going to have to face soon. I’m very grateful for the life that I have, and for the family and friends, and wonderful boyfriend that I have. That is what is important, and that is enough for me.”

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

I really hope that she will be able to achieve her dream of becoming a teacher. I can totally relate to her story. How about you? Do you relate to Amy’s diary entry? Have you any advice for her about making big decisions while dealing with a chronic illness? 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.

Sunday’s blog will be published tomorrow as we are heading to London for treatment on Sunday.

Until then,

Z.M

x

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!

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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

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

Hi there, hi there, ho there!

It’s Mother’s Day here in Ireland. While most moms enjoy having a day to relax, those of us with chronic illnesses would love nothing more than to actually get out and about and do something fun. However, no matter how much we want to, sometimes it just isn’t possible to move from our bed, let alone leave the house.

As a Spoonie, days where I have a random burst of energy come far and few between. When I do feel good I take advantage and go on a spoon spending splurge with my children. Our favourite activities are going to the beach for a walk, going for lunch/dinner or searching for fairies in the woods. Unfortunately, those days don’t happen very often as my Ehlers Danlos Syndrome and Dysautonomia wreaks havoc on my body. There are days where I can’t move from my bed never mind actually leaving the house. My illness not only affects me, but my entire family. The children have to endure many days stuck inside because mummy is unwell. So, for those days we try and do things together from the comfort of my own bed. Here are some of the things we do together. I hope it helps another Spoonie parent who may be at a loss with their children on the days they’re stuck in bed.

10 Things to do with the kids when you're bed bound

Read books

One of my favourite things to do as a child was to read with my Father. Going to bed when I was little wasn’t the big fight it turned out to be as a got too old for bedtime stories. His voice even to this day is so soothing. His Anglo-Irish accent is so pleasant to listen to that I could quite happily listen to him read the dictionary to me. Quite often I did! If I didn’t know what I word meant I was sent to his study to fetch the dictionary. There was no Google back then! My favourite book as a child was The Magic Faraway Tree by Enid Blyton.

The_Magic_Faraway_Tree

Considering the first edition was published in 1943, I’m sure the everyday lives of those children brought back some fond memories of my father’s own childhood during the 1940s. When we finished one chapter of that, Dad used to make up stories about a mischievous little girl called Yvette (hmmm I wonder where he got the inspiration for the name) who used to get up to all sorts of mischief. When her parents found out what she did the story always ended there with her parents shouting “Yeeevette!” A few years back I dug out my copy of The Magic Faraway Tree and gave it to my son Alexander when he was about 4 with a note:

“Dear Alex,

I hope this book brings you as much joy as it has brought me.

All my love,

Mum.”

I love reading The Gruffalo with the kids too. Sometimes Alex and I turn it into a song. Alexander will beat box while I rap the story. It’s great fun! Every now and then during the summer when my pain isn’t too bad, you might hear us in the woods reciting the story aloud by heart while we stroll through the rows of beautiful green trees and bunches of bluebells and daisies. Recently we started putting on the torch and getting under the duvet to read. It gets a bit stuffy though.

Watch movies

For as long as I can remember TV and movies has been a massive part of my life. Most things I know about life I’ve learned from television! I try to limit my own kids TV limit but sometimes when you can’t do anything but lie there, TV is a Godsend. I do love the days where I snuggle up with the children and show them the movies and TV shows I grew up watching. I get such a warm feeling watching their little faces in wonder at the magic of Mary Poppins or the original Doctor Doolittle. Of course the old school Disney films like Pocahontas, The Lion King and Aladdin are a must. Movies bring me hope and joy, watching others overcome their struggles sometimes give me a boost or inspire me and that’s what I want for my own children.

Watch funny videos

Sometimes looking up fail or funny animals videos on YouTube is just the thing to cheer you up. Laughter is a great medicine and the children get such a kick out of watching them. Of course do make sure that you are supervising the children when giving them access to the Internet!

Art

Art is a great therapy for everyone, young and old. Grab some crayons/markers/pencils and   a few blank sheets of paper or a colouring book. Art is proven to be beneficial for mental health, something many chronically ill patients suffer from, unfortunately. Creating art relieves stress, it encourages creative thinking, boosts self esteem and a sense of self-accomplishment, increases brain activity and so much more! Make art work a hobby if you enjoy it, it’s a great way to forget about your illness for a while. Creating art can help you work through the feelings you have about your illness.

family art.jpeg

Puzzles

Jigsaw puzzles are not just for rainy days; they’re great for bed days too. If you have a tray a table that you’d usually use for breakfast in bed, you can use that to make your puzzle on. A duvet is no good as one movement and the whole thing will fall apart. Soul destroying!

Play games

Board games are a great way to pass the time and are so much fun. I personally like playing Guess Who with my son because it teaches him to use his descriptive words, improve his concentration and his observational skills. Operation is another great option for fine motor skills, which many children with EDS have difficulty with. Travel sized games are perfect for playing in bed. Sometimes we forego the board games and play I Spy or Simon Says.

board game.jpeg

Creative writing

Creative writing can be very therapeutic for people suffering from mental and physical disorders. Using your own experiences can help you gain perspective and work through emotions and obstacles in your life. Of course, it doesn’t always have to be so serious. Sometimes it can just be funny to take turns making up sentences of a story. So for example if I said, “there was once a unicorn,” My son, Alexander might continue with “who had rainbow coloured poo,” or something as equally juvenile and silly.

Put on a show

Shadow puppets, actual puppets or just themselves a lot of kids like to entertain their parents and show off a song/poem/dance they’ve learned in school. I just love when my children sing and dance for me. It reminds me of when I was a child and my cousin and I would put on shows for our parents at Christmas time. There is a really cringey video of us doing our own version of Father Ted, a comedic show about three Irish priests. Our parents laughed a lot but I’m guessing it was the combination of alcohol and their 10-year-old children saying the iconic lines “Drink, Feck, Arse!” or “That money was just resting in my account.” The two of us really loved being the centre of attention, I can see that in my own children now.

child play.jpeg

 Have a sing song/listen to music

I have to say it but the majority of modern music pales in comparison to the music of “my day”. I grew up listening to Nirvana, Metallica, Smashing Pumpkins, ABBA (I know), The Police and Fleetwood Mac. Now I am partial to a bit of Ed Sheeran, Hozier, Rag N’ Bone Man a few other singer songwriters. But I feel that music isn’t as big on the story telling anymore. Stick on iTunes or a CD player (whatever you have) and introduce your kids to the tunes from your childhood. Take turns with your child and let them introduce you to the music they like. Again, my Dad’s influence comes in here. Driving to/from school or to a hospital appointment used to be my time to have Dad up to date with “new music”. As a teenager I was a big fan of Avril Lavigne and Dad was a fan too. We used to bond with music a lot. Sitting down on a Sunday morning listening to classical music is still a time in my life I look so fondly back on. Sometimes I put on some classical music like The Four Seasons and my son and I close our eyes and talk about what we imagine when we hear the music.

Knitting/crocheting etc

 Learning to knit/sew or crochet is a skill that will always be useful and also enjoyable. The sound of the clicking needles in a rhythm has always been comforting to me. Sadly, knitting isn’t an option for me any more since I began dislocating my wrist. Knitting was dying out for a while but it has gained popularity again when many celebs said it has helped relieve their stress. Teaching a child to sew a button is a skill that they’ll always have as they grow up. These practices are also a good way to improve motor skills.

child knitting.jpeg

Pick something to learn about

My kids love learning and my son’s choice of book is more often than not, an encyclopedia or history book of some kind. His thirst for knowledge is contagious; I love to learn with him. Even as adults there is still so much about the world we have still to discover and learning about it with your children is so, so rewarding. If my son asks me about how something works and I don’t know, we will try and find a book, or if we don’t have time (or I’m ill) we will Google it. This probably stems from my childhood. Whenever I didn’t know what a word meant, my Dad used to send me to his den to get the dictionary and look it up. This led to me knowing the longest word in the English dictionary by the time I was six (it’s floccinaucinihilipilification in case you’re wondering). Interestingly, this word never came to use in my days as a journalist! YouTube has some great educational videos produced for children. Netflix also has a brilliant selection of kid friendly documentaries. Our favourite are the dinosaur themed documentaries.

 Have a conversation

Every now and then I’ll ask my son questions like “What’s your favourite book?” “What’s your favourite colour?” Anything I can think of I’ll ask him. It makes him feel important to talk about what he likes and that mom is taking a real interest. Every time I ask his answer changes, it’s the nature of children, I guess. Ask them about their friends and school or what they want to be when they grow up. You could plan a nice day out for when you’re feeling better.

mom and child talking.jpeg

“Feeling guilty often comes part and parcel of being a Spoonie parent. But remember; you can only do your best and you won’t help anyone, including yourself if you run yourself into the ground. All our children want is to know they are loved and have some quality time with their parents.”

Until next time,

Z.M

x

Friday Feelings with The Zebra Mom

Hey there, hi there, ho there,

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

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

evie blog

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

 

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“Dear Diary,

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

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

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

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

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

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

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

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

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

Till Sunday,

Z.M

x

 

 

 

 

My Guide to Dysautonomia featured on Irish Dysautonomia Awareness

dysfordummies

Hey, there, hi there, ho there!

This week I guest blogged on Irish Dysautonomia Awareness with my Guide to Dysautonomia. Go check it out!

I’m putting together an e-book of all my guides of conditions relating to invisible illnesses. Want you illness included? Comment below!

Until friday,

Z.M

x

Irish Dysautonomia Awareness

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…

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