Tag Archives: chronic fatigue

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

 

 

 

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

giphy

“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.

0532aca066939dca1b8e3ca8d2c6499f

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 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.

profile_white_dress_bright

“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.

 

 

 

 

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.

giphy3

 

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.”

giphy4

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.

source

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.

source1

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.

giphy5

Till next time,

Z.M.

x

Don’t forget to share and to follow me on social media!

Facebook

Twitter

Instagram

Pinterest

twittersnapcode

 

 

 

A letter to my fellow chronic illness sufferers.

Hey there, hi there, ho there!

Recently I’ve read posts from fellow chronic illness sufferers about having to endure ignorant comments from strangers and sadly, friends and family about how how hard it must be for those in their life caring for them without their own difficulties being acknowledged. Now, I’m not saying that life for carers isn’t hard. They have it so tough but, what outside observers tend to forget is that there is a vulnerable person, in pain, unable to look after themselves who have feelings of loss, despair, grief and insecurity. Many sufferers are still dealing with the fact that they are not 100% independent. That can be a very difficult pill to swallow.

For those of you who have had to endure such ignorant comments, this letter is for you.

Do you ever have days where you think: “God, I’m such a burden.” or “I need something but I don’t want to ask for help again.”?

I do. All. The. Time.

How many of us have been with friends or family and listen to them go on and on about how wonderful your husband/wife/partner etc is for taking care of you? Most of them will be somewhat diplomatic but, there are times when you are unfortunate enough to endure a conversation with an ignorant friend or stranger.

You know your spouse/partner is wonderful that’s exactly why you are with them in the first place. You don’t need someone to tell you how hard it is for them to put up with your moods that are a result of fatigue, pain and pure unadulterated frustration. You don’t need  them to remind you that you depend on them to help you with tasks that any healthy person could do for themselves.

When someone says: “Isn’t he/she great for looking after you?”

This is what we hear:

“You’re a burden on your husband. You know that, right? If you didn’t have him you would struggle and probably be alone.”

OK, OK. It might sound a bit dramatic but if it’s what you hear almost every time your illness is discussed it grates on you. Words are funny things. When people are already insecure in themselves they can read into things that may not have any ill intent. Chronic illness eats away at our bodies but it also eats away at our minds and self confidence.

You hear how great your partner is more than you hear how great you are for not getting into bed and never coming out of it no matter how much you want to do that sometimes. But that’s the nature of having a chronic illness, isn’t it? People simply don’t get it. Unless you have a life threatening illness, nobody really listens. Chronic illnesses aren’t “sexy” diseases that can be marketed as well as life threatening ones. People don’t get that your symptoms are for as long as you live-there is no cure and there is no looming death sentence.

Yes, it is really hard for caregivers. Especially for parents and partners of people with chronic illnesses. Caregiving can often be a full time job without the pay. But, imagine how hard it is for the person who is being cared for. Having to be cared for can be downright humiliating. You need help getting off the toilet when your hips are giving you trouble, you need to be lifted out of the bath because you’re dizzy. You need help dressing because your so fatigued after having a shower. You need someone to cook and clean for you because you simply can’t. It takes years for people to come to terms with this-if ever.

You shouldn’t have to be considered “really special” to take care of your significant other, isn’t that the whole point of committing to each other? In sickness and in health etc, etc? Isn’t it part and parcel of choosing to have a child or deciding to spend your life with someone?

I have so many friends who are chronically ill who have their husbands/wives/mothers etc acting as their carers. I know they have had to endure ignorant comments from strangers about whether or not they should have children, that they are a burden on their partner and that their partner is “a really, really great guy that puts up with a lot”. But, I know those same people fight every single day to face their illness and a world that is filled with so much ignorance head on. I also know that these people are so appreciative of everything the people in their support system do to make their lives that bit more bearable. I see them declaring their love and appreciation of their caregiver to the world. But I also know that these same people lay next to their partners on the couch or in bed after a really hard day. They look them in the eye and thank them for everything they have done today to help them endure the pain, the fatigue and all the horrible symptoms they put up with every single day.

Of course you should thank them. They didn’t ask for this life either and yet, they do it anyway and without complaining (well, most of the time anyway). Doing something special for your caregiver every now and then is a nice way to show your appreciation. If your significant other is your carer, sometimes the romance can dwindle and the relationship can go from lover to carer. So it is important to do something together that keeps that passion between you going. Even if it’s snuggling up on the couch and having a kissing and cuddling session. It goes both ways, though. Sometimes those needing to be cared for can feel inferior, childlike, useless,unattractive and yes, a burden. We will explore maintaining romantic relationships next week.

So you, reading this. If you’re chronically ill and have a loved one caring for you remember this; you’re not a burden. You didn’t choose to be sick. You take on the biggest task of all. Surviving.

e339d4833d8d9e58394076402074a7e4

Life has given you a pretty crappy hand but you’re still here and that should be applauded. You put up with more things in one week than most people deal with in a lifetime. You are good enough. You are not “lucky” to have a parent/partner caring for you. Sure, there are people who wouldn’t be up to the task of looking after a chronically sick loved one but that doesn’t make you any more “lucky”. Luck has nothing to do with it. You fell in love with a good person and they fell in love with you for the same reason. You are not your illness. It does not define who you are-unless you want it to. Being chronically ill does bring out the not so pleasant side of people but it also embellishes all the wonderful traits of you too. You learn to be more compassionate, more appreciative of the little things in life like a walk on the beach or an hour in the playground with your child. You learn to take opportunities-when you can. You learn that saying no is perfectly fine. If you’re not up to it, you don’t do it. Chronic illness takes so much away but it allows us to see the world in a unique way.

Bottom line is your caregiver is a wonderful person but, so are you.

Till next time,

Z.M

x

Being Chronically Ill means..

Hey there, hi there, ho there!

Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.

In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.

Anyway,  I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.

Hope you enjoy my latest blog!

One day of fun=several days of a flare up.

You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.

giphy

You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.

You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.

You have more sets of PJs than actual clothes.

You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?

Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?

giphy1

Your bed is your best friend and your enemy.

When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.

You often develop a less than desirable odour.

When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.

When you do get round to washing  yourself you feel somewhat human again. But then you have to go lie down.

If someone were to shake you, you’d probably rattle.

You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.

giphy2

A successful day for you is getting dressed and actually leaving the house.

Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!

You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.

Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.

giphy

You have watched anything worth watching already.

Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.

Till next time,

Z.M

x

11 Crazy Things People With EDS Have Heard

I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.

giphy10

1. You have EDS because you’re vaccine injured.

No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.

giphy3

2. You have EDS because you’re possessed.

Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?

giphy4

3. You obviously have Lyme disease. That triggered your EDS.

giphy2

Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.

4. You have EDS because you’re stressed.

I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.

giphy5

5. You’re husband is a lucky guy.

*insert pervy wink here* Shockingly, this came from a Doctor!

giphy6

This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.

6.You’re sick because you’re in a bad relationship

This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.

giphy11

I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.

7. You’re too young to be sick

Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?

giphy7

I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.

8. You’re too short to have EDS

I think you’re confusing my condition with Marfan Syndrome.

giphy-2

9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.

Well, that’s just creepy.

giphy8

Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.

10. Your son has EDS because you’re a bad parent.

Like, what the actual F?

The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!

giphy9

11. Someone assumed because I was in a wheelchair that I was mentally affected.

I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”

 I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.

What do you do in a situation like that? Laugh? Cry? Both?

giphy12

Has any thing like this happened to you? Let me know in the comments!

Share this with your friends and family to help educate them.

Until next time,

ZM

X

Our medical trip to London. Part 1

So, I’m sitting on a plane at Heathrow airport. As I stare out the window and listen to the rumblings of the engines preparing to take us back home, I reflect on the last few days.

I have been running on adrenaline, will power and strong cups of coffee to let my family enjoy the experience of everything London has to offer. I know they wouldn’t have gone sight seeing if they knew just how unwell I was. I can’t hide it now though. My pelvis has separated, which it does every few days or with exertion. My wrist popped out and is now painfully bruised. I am emotionally and physically drained.

We arrived in London on Tuesday evening. Weary after our drive from Cork to Dublin, I was looking forward to getting to our hotel in the Premier Inn Earl’s Court and hopping into the bath for a soak. Ollie Pops N’Clicks had other plans..

In addition to inheriting all my wonderful genetic gifts, she also inherited my inability to travel without some form of sickness cropping up. Yup. Right there on the packed tube, close to me in the sling she vomited. And I mean vomited. Like ‘Team America’ vomited. It just kept coming! How could someone so little bring up that much puke?

giphy-3

The smell. Christ. Just what I needed. I look over at my husband only to see him laughing. Then everybody else in the tube noticed what happened and began to laugh too. Frickin’ hilarious, lads.

giphy1

We hopped off the tube so I could clean myself up as much as possible. We eventually made it to the hotel in one piece, just. Ravenous, we dropped off our bags, got washed up and went to the restaurant for a pleasant dinner.

I didn’t sleep so well that night. The next afternoon Bendy Boy and I would be meeting the Professor Grahame. I met him once at a conference in Cork. He was just as sweet and gentle as I had remembered. The Professor knows all too well the struggle Irish zebras face, almost total abandonment from our own Government and healthcare system. No specialists and the majority of tests needed are simply unavailable. We don’t even have an upright MRI machine.

giphy2

 

After an examination and a very long chat, the Professor confirmed Bendy Boy’s diagnosis of EDS Hypermobility Type. It was also noted that the six year old shows signs of Postural Orthostatic Tachycardia Syndrome. When Bendy Boy stands up, his heart rate rises and his feet pool with blood. I was shocked to learn of the POTS signs as he has never complained of feeling dizzy except when he gets out of the bath. I was surprised I didn’t notice the pooling.

The Professor seemed impressed with my knowledge and understanding of medical terminology. When there are no experts available to you, you have to become your own expert.

Here is an excerpt from my own medical report:

“On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale her shoulders and hips (borderline) are also hypermobile, as are her feet which flatten and pronate on weight bearing. There is a non-significant 2° scoliosis on the Bunnell scoliometer, but no other features of a marfanoid habitus. Her skin is soft and silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are numerous thin scars from knee scrapes acquired in childhood and similar over her elbows. Striae atrophicae were first noted by her at the age of 18, and she has minimal striae gravidarum despite having had two full-term pregnancies, a pointer to EDS. Gorlin sign, ability to touch the nose with the tip of the tongue is positive, and the lingual frenulum is rudimentary, both pointers to EDS. She scored very highly (25/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. Her blood pressure lying was 124/84, pulse rate 66; standing 124/84, pulse rate 80. This rise of 14bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS. The evident pooling of blood in her toes on standing is further evidence in favour of PoTS.

On the basis of the clinical findings I have formed the conclusion that Yvonne is suffering from a heritable disorder of connective tissue, the Ehlers-Danlos syndrome hypermobility type, a diagnosis that was established by Dr Mulcahy in 2013. I explained the nature of the condition to her, in particular its genetic basis and the vulnerability it confers on soft tissues to the effects of injury and overuse. In her case it has resulted in longstanding widespread joint and spinal pain. Since the time of her first pregnancy she has suffered a secondary chronic pain syndrome, a frequent occurrence in this situation. It is likely that her bowel symptoms represent an EDS-related intestinal dysmotility, and almost certainly she has PoTS.

There is a concern about the possibility that she might have craniocervical instability on the basis of left-sided weakness, headaches, and paraesthesia in her arms and legs. In addition she feels that her head feels too heavy for her neck. With this array of suggestive symptoms I have agreed that we should proceed to an upright MRI examination, and I will be requesting this at the Medserena Upright MRI Unit for her to have one on a future visit.”

And Bendy Boy’s report:

On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale his shoulders, cervical spine, hips, fingers and big toes are all hypermobile, as are his feet which flatten and pronate on weight bearing. There is a non-significant 3° scoliosis on the Bunnell scoliometer. Other features of a marfanoid habitus include a pectus excavatum, and hand-height and foot-height ratios both elevated to within the marfanoid range. I interpret these findings as indicating an incomplete marfanoid habitus, which may become more obvious as he completes his adolescent growth spurt. This should not be taken to imply that I feel he has the Marfan syndrome as the habitus is widely distributed throughout the family of heritable disorders of connective tissue. His skin is characteristically soft, silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are no paper-thin scars of note. Gorlin sign, ability to touch the nose with the tip of the tongue, is negative. The lingual frenulum is present (normal). He scored moderately highly (12/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. His blood pressure lying was 96/53, pulse rate 75; standing 102/62, pulse rate 85. This rise of 10bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS.

On the basis of the clinical findings I confirm that Alexander shares his mother’s phenotype and diagnosis.”

While I was being examined, Ollie Pop (16 months) decided to stand up on her own for the first time!  And I missed it. Thank You, EDS!

Receiving the confirmation of EDS HT and the noted symptoms of POTS given by Professor Grahame will hopefully bear weight in accessing services here in Ireland. Although, I won’t hold my breath. My GP was happy to hear that I took the plunge going to the UK and she’s very interested in my case. It took a long time to find a GP that genuinely cares. While a weight has been lifted knowing that I definitely have EDS and haven’t been misdiagnosed for the hundredth time, there is a fear. The idea of having cervical instability or Chiari freaks the sugar out of me. This last trip cost roughly 5,000 Euro. The next trip will be double that again. If Chiari is present and significant it may mean I will have to take a trip to the US to have surgery. We will just have to wait and see.

Coming home to Ireland, it is wet and windy. It’s miserable. The weather here reflects how I feel about Ireland and it’s healthcare system.

giphy3

Now that I’m home I don’t have access to the fantastic services and more importantly the compassion I felt in London. I felt so at ease.

I am fundraising to get back to the UK in the new year for further testing. I will give details of these in Part 2 along with the rest of my tale. If you can donate anything at all, just click on the link below. Even sharing our story would be a massive help.

https://www.gofundme.com/2befu24c

So, until next time,

ZM.

x