Category Archives: Rare Diseases

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

 

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

 

 

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

safe_sleep_7_leaflet-page-001

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

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

cosleeper

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

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

997034-the-gruffalos-child

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

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

Until next time,

Z.M

x

 

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?

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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

 

 

The Zebra Mom’s journey to London.

Hey there, hi there, ho there!

As I’m writing this it’s Rare Disease Day. I have a rare disease called Hypermobile  Ehlers Danlos Syndrome. This condition is believed to affect 1-5,000/10,000 people. Although, many experts now believe it may not be rare at all, just rarely diagnosed. The new diagnostic criteria (released on March 15) may lead to a more concrete number.

Anyway, so I said earlier on in the week that I would explain my absence from social media and why my blog was late and it just so happens to fit in nicely with Rare Disease Day.

Taken from the Journal.ie:

The National Rare Disease Plan for Ireland up until 2018 was launched in 2014 by the former Health Minister, James Reilly.

The key recommendations include creating both a Clinical Care Programme and a National Office for Rare Diseases.

The Minister said, “This is a very important plan because we have 8,000 different rare diseases in a small island like ours. It’s very difficult for patients to get a diagnosis and then indeed treatment.

So we had a young man here earlier who had his picture taken who is having is treatment in the UK at the moment for his rare condition.

Reilly explained how this plan has looked at “how to shorten that journey and reduce the frustrations that people experience trying to get a diagnosis, and then indeed organising the treatments.”

The former Health Minister said a designated Clinical Care Programme for rare diseases will improve specialist services and allow for the development of a joined up model of care for patients. While the National Rare Diseases Office will identify Centres of Expertise for various rare diseases, provide a helpline function for patients and families and provide surveillance of national rare diseases.

James Reilly added:
The significance of this plan cannot be overstated because it provides us with a roadmap for the prevention, diagnosis and treatment of rare diseases.
“I fully endorse this plan as the means to positively shape how we look after people with rare diseases in Ireland”.

So at present, there are 8,000 diseases affecting millions of Irish citizens. Although we might be genetically rare, together we are actually very common. 1 in 10 people in the UK have a rare disease.

So three years later has anything changed for rare disease patients? From what I can tell? No. Well at least nothing for anyone with my condition. We still have no Clinical Lead Consultant, no schemes to help us get Treatment Abroad. The current Treatment Abroad scheme only covers referrals to public consultants. All the experts in the Hypermobility Unit I attend are private. There is still a huge lack of awareness amongst medical professionals. The length of time to get diagnosis is still too long or it never happens at all. Approximately 90% of patients I surveyed learned about Ehlers Danlos Syndrome before the diagnosis was confirmed. So it’s the patients that are essentially doing all the work. My own story to diagnosis reflects this.

As I’ve said my reason for being late with this blog fits in nicely with the reflection of how rare disease patients are treated across the world but particularly in Ireland.

I was called by the wonderful Professor Rodney Grahame Friday two weeks ago. He asked me to come to London the following Wednesday to be examined as I am having some rather bizzare symptoms. Just before I get a migraine/headache one of my eyes bulge, the headache starts shortly after and my nose begins to pour a water-like fluid.

bulging-eye
My eye at the beginning of an episode. Note my right eye (your left) is bigger than the other one. It will get slightly bigger as time goes on.

Professor Grahame had never come across these symptoms before which, for him would be rather rare in itself. He said I should go ahead and have my upright MRI and I only got my appointment times the following Monday. I had to fly to London the following day to be at Professor Grahame’s clinic on Wednesday morning.

The flights were phenomenally expensive and on top of all the stress of sorting out flights and accommodation, I had to leave my daughter for the very first time. She is almost 2 and we had never been apart longer than a few hours, let alone 3 nights and two days. We cosleep and breastfeed so we are very connected. I had to organise getting a breast pump so I wouldn’t get mastitis, plugged ducts or reduce my supply. Luckily, I am apart of a very close knit breastfeeding community so one lovely mummy donated a snazzy electric pump to hold on to as I’ll be over and back from London for the next year at least.

So on Tuesday my Dad and I flew to Heathrow via Cork airport. I brought my wheelchair with me as I was approaching that time of the month which makes me more prone to dislocation and soft tissue injuries. Plus going around London for 2 days was going to be tough on me anyway.

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Me arriving at Earl’s Court Underground

We stayed in Earl’s Court as per usual as it is a handy spot in the centre of everything. We were one tube stop away from the upright MRI clinic, Medserena on Cromwell Road and just 15 minutes from St John’s and St Elizabeth’s in St John’s Wood. Earl’s Court is also only one stop away from Kensington which is where all the big museums are such as the the Science Museum and the Natural History Museum.

On Wednesday I got to meet the wonderful Jared, Sarah and Annabelle Griffin of Annabelle’s Challenge before my appointment with Professor Grahame. I’m speaking at the Vascular EDS conference Jared is organising in May. We also combined forces and launched the REDS4VEDS campaign worldwide to raise awareness of Vascular EDS.

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From left: Jared, Dad, Me, Annabelle and her friend at St John’s Hospital.

At noon I met with Professor Grahame. I am thrilled that he managed to squeeze me in during his last week of clinic as he is retiring from the Hypermobility Unit. He examined me and looked at the photos of my bulging eye.

He questioned whether I might have a problem with my Cerebral Spinal Fluid (CSF) and we also wondered whether I might have a Chairi Malformation as I have had weakness and other issues linked to Chiari for years.

Luckily Dad was on hand to show him a photo of my eye bulging and gave my medical history as a child specifically mentioning the weakness on my left side and my problem with going anywhere with artificial light and crowds as a child. I know now that it’s sensory processing disorder but nobody has put that down on paper as yet.

The next day we went to Medserena for my upright MRI. Two very dear Zebra friends of mine warned me that this wasn’t going to be as easy as a supine MRI and that both of them had never fully recovered from the scan. I really underestimated their warnings.

Professor Grahame had actually rang the clinic to make sure I was seen the day after my appointment with him. He ordered a scan of my cervical spine and craniocervical junction.

The staff at Medserena was very accommodating and polite, you didn’t feel like a client, you felt a visitor to someone’s home, not a cold and sterile clinic.

I went into the dressing room to put my valuables in the safe. Luckily, I had dressed in a loose top and a pair of leggings so I didn’t need to put on a gown. Just before I went in I took my Tramadol and Midon as suggested by the friends who had undergone this scan before.

Nervous, I found myself thinking about my children and husband. I pictured Olivia crying for mummy’s milk and Alex looking for cuddles in the middle of the night. I should be at home with them tonight, not hundreds of miles away across the ocean.

I sat down in the machine, luckily I got to sit as I was expecting to be standing. The scan wouldn’t have lasted that long if I was to stand because of my Orthostatic Intolerance.

The first position I had to look straight on. Because the scan takes 1.5 hours in total., the radiographer put a film on for me to watch. I had a choice between Skyfall or Tarzan. Didn’t matter to me either way as I didn’t have my glasses on, I could see diddysquat.

So, after the first position it was time to flex my neck downward, then upward and then right. There were a few occasions we needed to repeat scans as my images came out blurry. I had no idea why as I had stayed as still as I could. It’s ridiculous how still you have to be in an upright compared to a supine MRI. You can’t cough, you have to be breathe shallowly and you can not swallow. So you sit there five minutes at a time with saliva pooling in your mouth and your neck flexed in a position for five minutes.

When it came to my last position (neck turned left) I was in agony. After two attempts of this position, we had to give up. I was visibly in pain and it showed in the scans as they were very blurry.

Once I gathered my things in the dressing room, I went back into the reception and burst into tears. Not because of the pain-it’s not often that pain will make me cry now. No, it was my “fight or flight” mode gone into overdrive. I was so overwhelmed with the whole situation. Since the MRI finished at 5.45 (I went in at 3.45) my back, shoulder and neck had been giving me trouble.  Two weeks later the problems persists with swallowing becoming uncomfortable and slightly painful.

The lovely receptionist brought me some juice and chocolate for my shock. I was a mixed bag of emotions. I felt like I had been something very traumatic had just happened to me. For those of you who’ve not gone through this, it might sound dramatic but those who’ve been through this know my feelings are perfectly valid. The radiographer gave me a CD of my scan images and we left.

I’m sure for people without my issues, the MRI isn’t as draining or painful. But with the problems I have with my neck, it was torture.

That night I took a sleeping pill and slept from 9.30 until we had to get up for our flight at 7am. I had a headache like I was hungover, my whole body ached more than usual. This scan really did a number on me. But, I was going home. I’d see my babies and my husband and sleep in my own bed tonight.

The Aer Lingus staff were amazing on the flight home, very pleasant and very accommodating. Even though we were 30 minutes late taking off, we arrived just shortly after our arrival time. I was brought to the front of the queue in my wheelchair for every point in Heathrow and again in Cork, much to Dad’s amusement and delight.

When we came through the arrival doors of the airport the children saw me. Alex came bounding over and it took Olivia a second or two to realise mommy was home. She then came running over. Of course, it didn’t take her long before she climbed on my lap and latched on. Hubby came over with a big bunch of flowers to welcome me home. I have been on many trips before but never had a welcome party like this. My heart swelled.

The journey home was tough as the roads in Cork are abysmal especially after Hurricane Doris had come sweeping through.

I landed myself into my usual spot when I got home, on the couch. I’ve been quite ill since and have only managed to leave the house a couple of times in two weeks.

I received my report from Professor Smith in Medserena last Wednesday. Thankfully no Chiari was noted.

mri
Images from my upright MRI

The report was very detailed being four pages long. Here’s the Professor’s conclusion:

  1. In the cervical spine there is reversal of the normal cervical lordosis in the neutral position with evidence of instability at the C4-5 and C5-6 levels.
  2. There is no evidence of basilar invagination or of cerebellar tonsillar ectopia.
  3. Whilst the atlas is normally aligned over the axis. There is deviation of the odontoid peg to the left in the presence of intact ligaments of the craniocervical junction ligamentous complex.
  4.  On looking to the right and to the left the odontoid peg moves to the contralateral side indicating an element of laxity of the ligaments.

I am awaiting a call from one of my consultants to discuss the results and a course of treatment for my issues.

I return to London on April 9th this time for Autonomic Tests and physiotherapy. The children will be coming with me this time to be assessed by their physio too.

It’s downright criminal that we need to disrupt our lives even more and travel abroad to access experts and have these tests. They are nothing overly complicated and could easily be done here in Ireland but nobody does them. There are physiotherapists in Dublin who could look after the children but it is actually more hassle travelling 3 hours to Dublin than it is flying 45 minutes to London. At least we know the children are in safe hands there.

rare disease

I came across this image a few days ago while writing this blog and it really does ring true. This statement does not ring true to the doctors who look after us in the UK, of course but to the medical professionals who have no urge to learn or help those of us with Ehlers Danlos.

The theme of my talk at the Vascular EDS conference is about this very topic. Patients become the real experts when it comes to their condition. We know more about it than doctors who have trained for a decade or more.

I am the driving force behind my own medical care. For years I let doctors fob me off and dismiss my issues as nothing more than depression.

Luckily I have a great GP now who listens and does exactly what I ask her to do. I’m in charge of my own referrals, meds and treatments. She trusts my gut and knowledge. I am so grateful to have her, I know so many others who are not quite as lucky.

As I said, we are back in London in April and this visit is going to cost us 5,000 Euro.

I have friends helping to fundraise through coffee mornings and the likes.

My GoFundMe has been our main source of treatment money so far and I’ve been blown away by people’s genorosity.

Until Friday,

Z.M

x

 

 

Friday Feelings with A Chronic Voice

Hey there, hi there, ho there!

Sorry we are late to the party this week. I’ll explain in my post tomorrow why I am late.

Anyway, this week I spoke to Sheryl from A Chronic Voice. Sheryl suffers from antiphospholipid syndrome (a blood clotting disorder), Lupus (SLE), Sjögren’s Syndrome, Epilepsy, PSVT (a heart rhythm disorder), a repaired mitral valve, osteoporosis from long term steroids, and couple more illnesses. You can find Sheryl on Facebook, Twitter and Instagram.

My name is Sheryl and I’m from Singapore, a sunny island in Southeast Asia. Writing and travelling are my two biggest passions in life (I know, cliché, but it’s true ;)). Other hobbies I’ve been dabbling with of late include flower arrangement and learning French.

I used to work in an ad agency as a frontend web developer, but had to quit as the stress was literally killing me (needed blood transfusions). I am still trying to find ways to balance my health while earning a living. I feel very fortunate to have such supportive loved ones.

I blog over at A Chronic Voice and Journey Jot (albeit much neglected). I am trying to find ways to merge the two 🙂

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

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“Dear Diary,

It’s Friday and most people are out partying the night away. I am perfectly content that I’m at home, having a normal home-cooked meal or pizza with my partner, watching a movie. Sometimes we go for a spontaneous walk or outing. We do make an effort to dress up and go out once a month however, either for a dinner date, or to meet some new people. I feel that this is important even though I’d rather stay in, because I do not want to lose touch with the world. It’s so easy to become trapped in our own without even realising it, which creates tunnel visions and narrow minds.

Right now, I’m not in that much pain, so I’m all chummy with it. I think to myself, ‘oh, there’s plenty I can learn from pain.’ I’ll probably change my stance when it comes back with a sadistic grin…which should be soon as I have a surgery scheduled on Monday 😉

There is no future with chronic illness. To clarify, I don’t even know what’s up for tomorrow. I will have a rough idea only when I open my eyes in the morning. There is an underlying worry, for sure. I think to myself, ‘I am already so weak physically and unstable financially now. What more in 20 years time, when we all become naturally less resilient?’

Then again, I don’t feel as miserable as I used to anymore. I have come to realise that it is ridiculous to compare myself to the rest of society. Put it this way – if chronic illness and being in pain was the norm, how would the average person behave? From that perspective, I think I’m doing okay. My loved ones always say to me, ‘take it one day at a time, that’s all you can do’. And I think it’s getting drilled into my head pretty good.

Since I’ve become active on Facebook with my blog (I never really posted much before that), I think people have become more sensitive when they are around me. This is both a good and bad thing. While they are more compassionate, there is also a vibe of walking on eggshells, which I don’t like.

Strangers on the other hand are quick to judge anything invisible; I do that myself. But surprisingly, there are those with chronic illnesses who judge you harsher than society. Almost as if they have become so bitter and so engrossed with their illness, that they claim ‘ownership’ over it. And that’s risky behaviour which I hope I never sink too deeply into.

Thank you for taking the time to read my diary entry, and wishing you a fabulous week ahead!”

A big thank you to Sheryl for taking part in Friday Feelings despite having to prep for surgery tomorrow!

Can you relate to Sheryl’s entry? Do you find people walk around on eggshells around you or have you noticed competitiveness in chronic illness circles? You can comment below and let us know your thoughts. You can also follow Sheryl on Pinterest and Google+

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 tomorrow,

Z.M

x

 

Dear Minister Harris- aren’t you forgetting someone?

In 2016 the Dáil has passed a bill to make cannabis available in Ireland for medicinal use, after the Government said it would not oppose the legislation. People Before Profit TD Gino Kenny, the bill seeks to legalise and regulate cannabis products, which are used for medical purposes. Mr Kenny said his bill intended to make cannabis available to those with chronic pain, epilepsy, cancer, MS, Fibromyalgia and, under a doctor’s recommendation, would help to alleviate symptoms of illness.

Minister for Health, Simon Harris said that although he has concerns about some elements of the bill, he will not oppose its progression to Committee Stage. Mr Harris asked the Health Products Regulatory Authority (HPRA) to advise him on the scientific and clinical value of cannabis as a medicine. He said he wants to receive that advice from the agency before progressing the legislation any further.

The Minister also indicated that amendments would have to be made to the proposed bill to avoid the unintended effect of making cannabis legal for recreational use.

Minister Harris said he strongly believes that Ireland needs to take a look at policy in relation to medicinal cannabis, saying a number of countries have already taken the steps to make it available. He said he has met a number of patients and patient groups over the last few months who have highlighted their belief that it could relieve pain.

After the HPRA released their report, Mr Harris then released a statement about how things will most likely go ahead in regards to the use of Medical Cannabis. Check out this extract:

“The report stated that patients accessing cannabis through the programme should be under the care of a medical consultant
Medicinal cannabis will be made available to patients in the Republic of Ireland with certain types conditions. I’ve asked my officials now to outline to me how quickly I can put a compassionate access programme in place.
The minister thanked the Health Products Regulatory Authority (HPRA) and the members of the Expert Review Group for their work on the report which he described as a “milestone” in the development of policy on medicinal cannabis.

“This report marks a significant milestone in developing policy in this area. This is something I am eager to progress but I am also obligated to proceed on the basis of the best clinical advice. The report notes that this is ultimately a societal and policy decision and I have decided to proceed with the advice of the HPRA and establish an access programme for cannabis-based treatments for certain conditions, where patients have not responded to other treatments and there is some evidence that cannabis may be effective,” Mr Harris said.

The HPRA report advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with:

Spasticity associated with multiple sclerosis resistant to all standard therapies and interventions whilst under expert medical supervision.
Intractable nausea and vomiting associated with chemotherapy, despite the use of standard anti-emetic regimes whilst under expert medical supervision.
Severe, refractory (treatment-resistant) epilepsy that has failed to respond to standard anticonvulsant medications whilst under expert medical supervision.

Now, I am delighted that those suffering from the conditions mentioned above will get relief by using Cannabis but, I have a very big concern. What about those of us with chronic pain? What happened that we have become excluded from the list?

In his letter published on chronicpain.ie, Professor David P. Finn, PhD states:

“We now know from thousands of peer-reviewed scientific publications that the endocannabinoid system plays a key role in regulating physiological processes including pain, stress/anxiety, appetite, learning, memory and cell development.

Multiple laboratory and clinical studies support the effectiveness of cannabinoids for the treatment of a wide range of disorders, including chronic pain, multiple sclerosis, epilepsy and others. Further randomised, double-blind controlled clinical trials looking at larger patient numbers and over longer time frames would certainly be welcome.

Evidence to date suggests that the adverse side-effects of cannabinoids used in a clinical context are mostly mild, and not overtly serious or life-threatening.

We should also remember that cannabis plants can vary considerably, with different strains containing very different contents of THC (the constituent responsible for the ‘high’), and with over 100 different cannabinoids present in varying amounts across different strains, many of which do not have abuse potential but may still have significant therapeutic potential (e.g. cannabidiol)

There is no strong rationale for treating cannabinoids any differently than, for example, opioid drugs such as codeine or morphine, both of which are derived from a plant (the opium poppy), have been mainstays in modern medicine for decades, have abuse potential, and whose adverse effects, dependence liability and potential for harm are in fact significantly greater than those of cannabinoids.”

Professor Finn PhD is Professor of Pharmacology and Therapeutics in the National University of Ireland Galway and President of the Irish Pain Society.

I take 5,000 pills a year for my pain. 5,000. Let’s say I continue on these doses and I live to the ripe old age of 80. That’s 250,000 pills. A quarter of a million pills. In comparison to some of my friends, that’s a very low figure.

What happens to our bodies when we are on opiates long term?

Long term opiate use can cause veins to collapse

Can cause sedation

Can slow the digestive system (Gastroparesis)

Can cause greater sensitivity to pain (Hyperalgesia)

Can cause muscle rigidity

Can make the immune system weak

Can cause respiratory depression

Can cause twitching of the muscles (Myoclonus)

Can cause Hormonal Dysfunction

Can increase the risk of depression

the list goes on and on. I can’t imagine taking 250,000 pills for the next 50 years is going to do my liver any favours either!

Essential oil made from medicinal cannabis

What about Medicinal Cannabis?

Marijuana does have any proven side effects. THC binds to cannabinoid receptors, which are concentrated in areas of the brain associated with thinking, memory, pleasure, coordination and time perception. The effects of marijuana can interfere with attention, judgment and balance. Some studies have produced conflicting results on whether smoking marijuana carries a significant cancer risk but there’s nothing concrete. There is also conflicting evidence on whether long term use of Cannabis effects one’s mental health but again, nothing concrete. Scientists say that it may increase the risk of psychosis but, those studies seemed to focus on the use of Cannabis in teens and young adults recreationally, not medicinally. If someone has evidence to state otherwise, please do let me know so I can amend this.

There is a plethora of evidence that shows Medical Cannabis can be very beneficial for patients with chronic pain. Many of us would opt for Cannabis as it is diverse and doesn’t need to be smoked. It’s also natural so we could cut way back on the manufactured pain meds. Surely it would be much cheaper for the HSE to supply chronic pain patients (who have medical cards) with something that can be grown in abundance than to pay for trillions of pills each year?

Taken from Irish Health, ‘Long Waiting Times for Chronic Pain Patients’, Jan 2016

“Chronic pain affects around 13% of the Irish population, however those affected have to wait an average of two years before seeing a doctor specialising in this area. According to Dr Dominic Hegarty, a consultant in pain management at Cork University Hospital, chronic pain ‘presents a major challenge to the citizens and the economy of Europe’.

Most people affected experience their pain for more than two years and some are affected for 20 years or longer. Chronic pain patients make an average of seven visits to healthcare providers every year, with 22% making more than 10 visits.”

Imagine how these stats would change if medical cannabis was prescribed to chronic pain patients? If cannabis is as effective as the experts say for chronic pain patients, it could mean waiting times drastically reducing as many patients wouldn’t need to see as many specialists.

There is so many things wrong with our health system here in Ireland. Waiting times are abysmal across the board. Many of us finally get to see the specialists, get prescribed a cocktail of meds, exhaust all options for it not to work. The patients are loosing out. What does the Government have to loose by allowing those who have exhausted all options to try medicinal cannabis?

Let me leave you with this, dear Minister. People with chronic pain are three times more likely to develop psychiatric disorders according to Harvard University. So, not only are the Government and HSE footing the bill for pain treatment but for psychiatric treatment also. Three times more likely to develop conditions such as depression and anxiety, is it any wonder why there is such high rates of suicide amongst the chronic pain community?

Please think about the implications of excluding those of us with chronic pain. By allowing us to give medicinal cannabis a try, you’re potentially giving a piece of a person’s life back or saving one.

Sincerely,

A sufferer of chronic pain, a mother of two children with chronic pain disorders and of course, a citizen of Ireland.

 

 

 

 

Marfan Syndrome Awareness Month-Guest Blog

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February is a special month to me, not because of Valentine’s day or a birthday, but because it is Marfan Syndrome Awareness Month. This is a month where I can shout about my rare condition as much as I like, trying to inform and educate as many people as possible. Conditions like mine don’t get a lot of awareness so awareness days and months are a great opportunity to teach people a bit about your condition. Mine is called Marfan Syndrome and it’s a rare genetic connective tissue disorder.

Think of the connective tissues in your body as glue, they help maintain the structure of the body, internal organs and other tissues, so they are pretty important! These tissues are found all throughout the body as well so Marfan can affect everything from your heart to your joints. It’s a genetic condition so most people inherit it from a parent, I inherited it from my Mum, but sometimes spontaneous mutation occurs which is when the gene just changes. The condition is mainly known for the life threatening heart problems that can occur as a result of it. Marfan causes the tissues in the body to become too stretchy and this means that the aorta, the main artery in the heart, is able to stretch beyond what it should, this is called an aortic aneurysm. Then if this is left to continue further the aorta could tear or even burst, this is called an aortic dissection and sadly both my Grandad and Uncle passed away from one. My aorta is currently stretching towards the point where I’ll need major open heart surgery to replace part of it, my surgeons reckon I’ll need the surgery in my earlier twenties.

That’s the not the only problem that Marfan has caused me though and not the only problem that has/will require surgery. Growing up as a child I only had mild joint pains and joint hypermobility but when I was a young teen I was diagnosed with Scoliosis, the sideways curvature of the spine. At first we thought that it wasn’t going to get much worse but unfortunately it got a lot worse and I ended up needing surgery to correct it. Surgeons spent 6 hours straightening my spine using metal rods and screws, it was a pretty brutal surgery and the recovery was tough. I also suffered a complication though and almost a year after the first surgery I had to go back into the operating theatre to have a screw replaced because it was sitting on a nerve and causing me severe pain.

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After that my hips started hurting so off I went to the doctors again, I was referred to see a hip surgeon and x-rays revealed that I had another secondary condition because of Marfan. I had a hip deformity called Protusio Acetabuli which basically means that my hip joint sockets are too deep which is causing early wear and tear and cyst formation in the joint. I had my right hip replaced when I was 18 and my left hip will also need replacing but the 3rd diagnosis that came after that is complicating that situation. During that whole time I also had ever increasing pain in my lower back that was so severe that I had to start using a wheelchair and then a powerchair. MRI and CT scans revealed that I had a large 5.5cm Tarlov cyst sitting in my sacrum, the triangle bone at the end of your spine but before your tailbone. It’s a cyst that grows out of a nerve root and fills with spinal fluid, putting pressure on nerves causing pain and it also cause me severe headaches and migraines. The cyst is also eroding away my sacrum which is leaving me at risk of fracturing it, hence why the left hip replacement isn’t being done yet as the force of that surgery would almost certainly fracture my sacrum.

I also suffer with regular joint dislocations and subluxations as well as severe chronic pain and fibromyalgia. I’ve managed to turn my bad experiences into a good thing over the years though, I use my blog and social media platforms to raise awareness and I’ve also been able to work with some great charities such as The Hypermobility Syndrome Association and The British Heart Foundation. It can be lonely and frustrating at times having a rare condition but I find that the online spoonie and disabled community really help that, even if you aren’t talking to people with the same condition.

The last thing that I want to leave you with is some of the signs and symptoms of Marfan, key characteristics of the condition to look out for: being tall and slim with long arms, legs and fingers, hypermobile joints, small lower jaw, high roof of the mouth, flat feet, breastbone deformities, crowded teeth, scoliosis, lens dislocation in the eye(s), early cataracts & glaucoma and aortic dilation/aneurysm.

You can find out more about Marfan Syndrome and Shona’s experience with it on her blog: Shona Louise.

 

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

Hey there, hi there, ho there!

So last time we discussed how sometimes people forget that life for the chronically ill person is far more difficult than a carer’s. I briefly touched on how relationships can dwindle from lovers to a carer-patient relationship when your signifiant other is acting as your carer. So, with that in mind, let’s look at some ways you and your partner can keep things romantic even when chronic illness tries to intervene. A lot of the things I’m going to talk about can be applied to any couple that may have let the romance die out a little.

Kiss. 

When you’ve been with someone a long time, sometimes you genuinely forget to kiss-even if you’re not chronically ill.

“Even just a quick touch of the lips.”

When you’re so busy concentrating on your illness and/or family life it can be easy to forget to just stop and have a moment together.

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Do something together at least once a month.

Whether it’s getting in some alcohol free wine/beer, watching a romantic movie or having dinner together-make the time to spend a couple of hours together not talking about family/illness etc. Even a gentle stroll on the beach/ woods while holding hands can be just enough to keep that flame-a-flickering.

Go back to where you first met.

If it’s possible, go back to the place where you first clapped eyes on each other. Try and remember how you felt that day. Recreate your first date. Go to your friends house and help them get you ready.

“Have your partner pick you up or meet you at the place where you had your first dinner/drink together.”

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Do something nice for each other.

It doesn’t have to be a birthday or a special occasion to do something nice for your significant other. It doesn’t have to be a grand gesture or anything expensive. Write a love letter and leave it somewhere for them to find.  Make a playlist of all their favourite songs or songs that remind you of them. Run a bubble bath, light some candles and let them have some time to themselves.

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Massages

Get some nice oils, light some candles and help get those pesky knots out. PLEASE do be careful if you’re massaging someone with a hyper mobility syndrome-last thing you want on your romantic night is to end up in A&E!

Go on a weekend break/holiday.

If you’re like me and are seriously affected by low pressures and crap weather, you might appreciate getting away to somewhere warm (but not humid).  A nice week away to the Mediterranean can give you and your partner a break from pain and all the other symptoms associated with your condition.

Renew your vows.

You don’t need to recreate your wedding day-unless you want to. You can simply organise to renew your vows with your priest/registrar/humanist. You can do it alone or just invite your close family and friends.

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I love you.

Those three simple words should be said every day. Whether it’s first thing in the morning or last thing at night.

“Let your significant other know that they are loved.”

Just like kissing, sometimes it can be easy to forget to say it. Especially when brain fog is a factor of your illness. Set a reminder if you have to!

Sexy time.

If you can do it and want to, go for it. 90% of the time us spoonies don’t feel sexy or attractive. Sometimes you gotta make yourself look good on the outside to help you feel better on the inside. Make yourself feel sexy by having your hair/ make up done. Have a relaxing bath, shave your legs (if you want), get into a nice nighty or PJs. Do whatever makes you feel good about yourself. Sometimes after all that effort-the last thing you want to do is to do the horizontal mambo but if you still have some spoons left and you’re not in too much pain, use that last bit of energy to make lurve. Remember, you don’t have to necessarily have to “go all the way” sometimes some heavy petting can be just as nice.

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Till next time,

Z.M.

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