Posted on

Strike a Pose, Give Yoga a Go

Yoga Class, Yoga, Pilates, MediStori, Benefits of excercise, Perception of yoga, Give it a go

When most people think of Yoga or Pilates, they think of people lying around, relaxing and doing deep breathing with the odd stretch thrown in. I have to admit (and not so long ago at that!) I kinda thought this too whenever I heard my Mum say “I’m off to Yoga”. But during my final year of college I decided to take it up – much to her excitement!

So many people take up fitness classes because they want to lose some weight and tone up their bodies (you know it’s true, ladies haha) and they don’t see classes like Yoga or Pilates as a viable way to achieve their weight loss goals. I too thought the same and I, like that, saw it as a lazy kind of exercise. Many of my college friends who swore by Kettlebells and Spinning also saw it that way but they were so surprised after seeing my results after just a few weeks of me taking regular classes of Yoga and Pilates: I had not only started to tone up but I was also losing weight – and I didn’t come out of the classes drenched in sweat either, which was an additional bonus.

The perception in many people’s minds of slower and calmer workout classes like Yoga and Pilates is that they are great for your mind but not so much for your body.

Yoga Class, Yoga, Pilates, MediStori, Benefits of excercise, Perception of yoga, Give it a go
Yoga classes are tougher than you think

The reason I actually initially took it up was because of this very way of thinking and I thought it would clear my mind and relax me through the stressful year I knew I was going to have ahead in my final year of college. But not only did I leave every class feeling incredibly chilled, my body also felt amazing. My muscles felt like they had done a slow yet effective workout. Anyone who has ever tried out a high intensity workout class like Kettlebells, Spinning and Circuits know they usually leave sweating like a pig [sorry, but it’s true!]; they are almost always out of breath and most are barely able to walk the next day (wait, maybe that was just me!).

I personally always hated the feeling where classes just seem to drag on with every swing of the Kettlebell or lift off the Spinning Bike and where I’d constantly be looking at the clock – and all for what – just to burn a few calories? I often asked shouldn’t getting fit be fun?

Yoga opened my eyes to the fact that you don’t have to sweat buckets and get out of breath to tone your body and become fitter.

A few months into practicing Yoga on a weekly basis, I then thought I’d give Pilates a go as well. Initially I had had the same beliefs about Pilates, as I did about Yoga, though I’d heard that it was meant to be more difficult. But since starting Pilates it too surprised me and taught me that you don’t need to do high intensity exercises to wake up the next day in pain and just because you do slow movements and stretches doesn’t mean your body and muscles aren’t getting a great workout. 

In my personal experience, that couldn’t be further from the truth.

Keep Calm, Yogalates, Yoga, Pilates, MediStori, Pose, Positions, Fun
Yoga and Pilates calms mind, body and soul

The list of benefits of practicing Yoga and Pilates is endless

  • Increased flexibility and muscle strength
  • Betters your bone health
  • Boost your immune system
  • Lowers blood sugar
  • Helps you sleep deeper
  • Helps you clear your mind
  • Prevents digestive problems
  • Increases core strength
  • Stability and peripheral mobility
  • Improves balance, coordination and circulation

Plus so much more!

 

Furthermore both Yoga and Pilates are highly tailored for every person because there are so many different types to choose from (Power Pilates, Yogalates, Elderly Pilates, Power Yoga, Prenatal Yoga, Hot Yoga, and even Laughing Yoga)  allowing anyone and everywhere to practice and see at least some of these benefits. The countless advantages of practicing either Yoga or Pilates, perceived as “easy” or “laidback” workouts, proves that appearances are often misleading. Another bonus is that the only equipment needed is a yoga mat, and yourself of course.

At the end of the day, I’m not saying don’t do Kettlebells, Spinning or any other form of exercise isn’t good for you – they all are – but I just feel it’s really important that you find what suits you best and that you have fun doing it!  It’s whatever suits your personality, your body and what you get the most enjoyment out of – and that truly depends on each person.

Yoga and Pilates strengthens not only the mind but the body too

 

This is clearly reflected when the discussion arose here in the MediStori office – Olive herself loves [and is addicted to!] Zumba; Áine enjoys high intensity workouts like circuits, while I’m obsessed with Yoga and Pilates [I think you’ve gathered this by now!]. The benefits of exercise to improve health, wellbeing and mindfulness of employees in the workplace has been showcased across the globe from very small to very large organisations – most recently NHS CEO Simon Stevens announced major drive to improve the health and wellbeing of 1.3m health service staff by “establishing and promoting a local physical activity ‘offer’ to staff, such as running yoga classes, Zumba classes, or competitive sports teams.”

So as my final word, I personally would like to ask you to open your mind, and why not give a Yoga or Pilate’s class or go, or even any other exercise class that you think you could enjoy?

Sure why not – what’s the worst that could happen?

It might even surprise you and you could learn to love it, just like I did.  

Thanks a million for reading,

Alice 😀

 

Posted on

Ehlers Danlos Syndrome & Hypermobility

Zebra, EDS, Hypermobility, Rare Diseases, Chronic Illness, MediStori

Last week the MediStori team were discussing how they could raise awareness about complex conditions that we come across on a daily basis, through talking to patients, carers and charities. So when Olive asked me would I write a blog post on Ehlers Danlos/Joint Hypermobility Syndrome, due to my complete lack of knowledge on the disorder, I was nervous – I thought it sounded like some kind of superpower! 

However (sadly) this is not the case.

EDS (Ehlers Danlos Syndrome or Joint Hypermobility Syndrome) actually affects approximately 1 in 10,000 people in the world. It is classed as a rare disease and is an inherited connective tissue disorder that predominantly affects the skeletal system.

As I myself had no personal experience with EDS, I wanted to learn more about real people with this chronic illness and hear about their journeys. Researching and finding information on a disease is one thing, but with anything medical related, the experience of patients who are actually suffering from a particular illness can be much more helpful than pages and pages of medical data. They give a crucial and unique insight, allowing people who don’t have an illness to be enlightened, and ultimately understand it in a completely different way. Blogs and videos have helped me better realize the true nature of EDS. From simply reading the information, I honestly thought it sounded like an easy chronic illness to live with (if there is such a thing), but patients’ personal blogs have opened my eyes to the full extent of this disorder, which can be extremely debilitating in many cases.

Many “sister” illnesses are regularly associated with EDS, for instance – Abdominal Aortic Aneurysm, Scoliosis, Emphysema, Postural Orthostatic Tachycardia Syndrome (POTS), to name just a few. This is because connective tissue is an essential component of every part of our bodies, making secondary disorders common. Patient self-management becomes critically important with so many illnesses and their accompanying medications, but it can be so hard to just get better – never mind keeping it altogether, so it is important that toolkits like the MediStori, apps or pillboxes, for example, are made available for patients with these type of conditions in particular, to simplify their personal care. And because it is really important for those with rare diseases to keep track of medical history for themselves, not just for now, but for future generations also.

Zebra, EDS, Hypermobility, Rare Diseases, Chronic Illness, MediStoriIn short, EDS is a life-long chronic illness with no cure, but managed through supportive interventions. People with extremely rare diseases, like EDS, are often classed as “Zebras” termed because of the famous medical proverb from Dr. Theodore Woodward, who stated “When you hear hoofbeats, think of horses, not zebras” The saying means that doctor and patients should look for the expected cause first, rather than the exotic. Since doing my research and reading patients stories, I feel that more supports in health care and community settings are needed for these “Zebras” of the world, by encouraging them to be proactive in managing their disorder.

Here at home, I am happy to say that there are two recognised support groups for EDS [details below].  These organisations aim to support and empower people with Ehlers Danlos and Hypermobility in Ireland and allow people affected by these chronic illnesses to connect with each other and share their experiences. They also aim to educate and provide critical information about the different types of EDS, which vary from being mild to life threatening:

Classic EDS: The main features include stretchy and fragile skin, and poor wound healing.

Vascular EDS: This is one of the most serious forms of EDS. Main features include fragile blood vessels and organs which are at risk of rupture.

Hypermobility EDS (HEDS): This is the most common type of EDS. People with HEDS generally have widespread joint mobility, together with other symptoms such as chronic joint and muscle pain and chronic fatigue.

I did however know how important connective tissue was because I had studied Biopharmaceutical Science in college, however I had no idea just how disabled you could be if it wasn’t “working” properly.

Connective tissues are crucial – they connect, support, bind, or separate other tissues or organs and they not only provide a supportive framework for our bodies, they also give strength to our joints, ligaments, skin and blood vessels. Because of the importance of connective tissues this disorder can compromise many of our bodies’ normal functions and systems. It is genetic defects within the connective tissue proteins that are the root cause of EDS. There can be a wide variety of defects with these proteins, leading to many different types of EDS. This disorder can “run true” in a family, with each individual family suffering from a distinct yet slightly different disorder.

Dr. Theodore Woodward, EDS. Quote, MediStori, Blog, Rare Diseases

So in conclusion, after doing all my research on this debilitating disease, I have now come to realise that EDS itself is actually not a superpower – but instead those who live with it are super people.

Thanks so much for reading.

Alice 🙂

Support groups for EDS

Irish EDS & HMS

Rare Connect Org

EDS Awareness Ireland

 

Posted on

How I Changed My Perception of Carers…

If you had asked me months ago who a carer was I would have said a carer was a middle aged lady who looked after the elderly, a little like paid home help. However, since working here on the MediStori Movement, I’ve come to realise that I couldn’t have been more wrong.

After speaking with so many people who have been trialling the MediStori, I am now aware that carers are so much more. A lot of the time they are not paid, they are mums, fathers, daughters, sons, sisters and brothers, caring for a loved one who needs a little help! Most are juggling a full time job along with home life while still managing to find time to care for others. Of course there are also paid carers to help these families out but I can admit that I had a very narrow vision when I made my original assumption.

Health & Wellness, Carers, MediStori, Launch, Mayo
Health & Wellness Day for Carers Leaflet
Carers Association Ireland, Mayo, MediStori, There To Care
The Carers Association Information Leaflet

A few months ago, a flier caught my eye. It was for National Carers Week (June 8th – 14th 2015) and there were a number of events taking place nationally, including three in Mayo – a health & wellness day for carers in Castlebar (the launch) along with stress management workshops and beauty demonstrations in Ballina & Louisburgh.

I immediately thought of Olive, and wanted her to go to one of these. After all, she is a young mum, caring for three little girls, her husband, and in the past her dad. In my opinion she deserved a little treat and an afternoon of pampering for all that she does. After a while, it became clear to me that not only should Olive go for herself but I should go and introduce carers to the MediStori.

So I contacted the organiser of the Mayo events, Bernadette Moran, and she was more than welcoming for us to go along on the day.

On the morning of the launch I couldn’t get over the amount of carers present, both young & old. We only had the stand set up and they were streaming in in big numbers. Within minutes, I knew we had made a good decision to come to this event, as there was a massive amount of interest in the MediStori. Carers could immediately see the benefits it could have in helping them look after others, and give them piece of mind that when they left their loved ones with someone else, that all the necessary information was there, in one easily accessible place.

 

 

Manager of Mayo’s Carer Centre, Bernadette Moran, Creative Founder, MediStori, Olive O Connor, National Carers Week, Launch, Mayo
Bernadette Morn & Olive O Connor at Launch of National Carers Week
CEO of Carers Association, Mr. John Dunne, Creative Founder, MediStori, Olive O Connor
CEO of Carers Association, Mr. John Dunne with Creative Founder of the MediStori, Olive O Connor
EndaKenny CarersLaunch
An Taoiseach, Enda Kenny, speaking at National Carers Week Launch

 

To open the launch, CEO of Carers Association, Mr. John Dunne, Manager of Mayo’s Carer Centre, Bernadette Moran, and An Taoiseach Enda Kenny all spoke briefly. One thing came clear from all their speeches – they recognised the hard word of carers in our country and that these carers take a huge burden of cost off our health services by doing what they do and they wanted to do something to acknowledge their hard work. Breege Mulvanney, Mayo Carer of the Year 2014, was due to speak on the day about why Carers Week matters to her but unfortunately, at last minute, she was unable to attend. However, the inspirational speech that she had prepared was read aloud and you could feel the positivity in the room.

There are over 187,112 people in Ireland who care for somebody at home* These carers were described as a treasure to our country and a treasure to our health system. All three speakers acknowledged that carers just get on with it on a daily basis but they also recognised that while it’s tough in its own way, it’s more rewarding in many other ways.  Also it was address on the day that we are all on the same conveyor belt of life and that carers come along and make life as comfortable as it can be. It is very difficult for some carers to combine this role with a full time job. We have older people looking after older people and others dealing with the stress of caring for people with addictions or serious illnesses. Everyone in the room agreed that we need to support carers in what they do and that carers deserve the best in what we can give them.

One thing that became evident as the day went on was that carers are not alone. Various companies were on hand to offer pampering and treatments, from a cut and blow dry to a full make up overhaul to massages and reflexology. Boots Pharmacy also provided goodies bags for the first 40 carers who registered on the day. All in all, the broad Mayo community came together to support our carers and the MediStori team were proud to also be there to offer our support.

After walking away that day, I had a new respect for carers. Not that I never had respect for them, but I never realised exactly how much they do and what they go through on a daily basis. Their stories, their lives, their selflessness really struck me and they never complained once. They were just delighted to be recognised and have a day out for themselves and be offered supports. Even though there was some talk of needing more resources and assistance from the government going forward, they all seemed to leave very happy and relaxed from their day.

Carer of the Year, Awards, Nomination Form, The Carers Association, Tunstall Emergency Response, Family Carer, Young Carer, MediStori
Carer of the Year Awards 2015, Nomination Form

 

If you are care for a loved one at home and need some help, contact your local Carers Association. They are “there to care” and provide a range of supports and services. I am delighted that we decided to offer the MediStori to these carers and hope that it helps them, even if only in a small way.

If you know a carer who you feel should be recognised for their efforts, then why not nominate them to be either Ireland’s Family OR Young Carer of the Year. Closing date for nominations is 11th September 2015 and they can be done here

We recently came across this lovely video made by young carers in Donegal that some of you may like to look at: 

 

 

* Taken from Carers Leaflet

Thanks so much as always for reading. Áine 🙂

Posted on

Reassurance – Often written, rarely verbalised.

As I came in from another long day at work, my three girls (and three dogs, I might add!) all came running at me – just before I got a chance to glance at the post that had arrived that day.

After seeing their happy faces and hugging them tightly, I felt so reassured that they were so happy, and that yet another day had gone by where I had gone to work and that they were still okay by the time I got home (don’t get me wrong my babysitter is amazing – it’s just a thing I think all moms have a little anxiety about from time to time when they leave their kiddies all day with someone else!)

Anyway, my kids (and dogs!) quickly forgot about me as they knew it was near to bedtime and so they scarpered off to get in their last few minutes of play and television watching. It was then that I took the opportunity to give my attention to the mail, as I had noticed that one envelope had a stamp from my children’s hospital on the front, and I was waiting every day for six long weeks for it to arrive.

However, as soon as I started reading it, my previous feelings of reassurance were soon replaced with feelings of dismay.

The letter started with the usual opening statement outlining how my daughter presented on the day and then went on to discuss her medical history. There were, of course, references to the concerns I had as a parent which were followed by this sentence…

“I have reassured mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.”

So why did I get upset about this? Wasn’t it great to hear she was doing well? 

Well first of all, of course I knew how my daughter was the day of the appointment – I was after all, in the room with her. I didn’t take her out of school nor me out of work to seek reassurance about this. Nor did I go to seek reassurance that she would be followed up on (I had taken this as a given.) 

I had gone there with a specific agenda.

I wanted a proper plan to be put in place for her, for when she wasn’t doing “okay”. With three years of my daughter living with sporadic high blood pressures, a huge fear had settled on me that one day something terrible would happen to her – and all because we had no clue what to do or where to go when this happened to her.

Now please don’t classify me as a neurotic mum yet…please hear me out.

We had been told by specialists that there could be a possibility of my daughter having phaeochromocytoma or carcinoid syndrome, but that sometimes it is only when puberty starts that a true picture would show itself. My daughter also was diagnosed with the same hole in heart that her daddy has [PFO], of which he suffered a stroke from at age 42.

So, for three years our “emergency plan” was to go to A&E every time her blood pressure spiked, to get her urine catecholamines done. This quickly fizzled out because firstly, it wasn’t good for any of us (especially her) to be made more anxious by being in hospital; secondly her blood pressures were spiking all the time and it wasn’t feasible to keep travelling up and down, and lastly, I swore that if I ever heard the term “white coat hypertension” one more time, my own blood pressure was at risk of going through the roof!

So all I wanted out of this appointment was to be reassured that nothing bad was going to happen to her, that I wasn’t “crazy” and that we could have a proper short term and long term plan for her. But by the end of the appointment (and the letter) it was obvious to see that we weren’t going to get this at all.

It also occurred to me upon reading the letter that the other health care professionals that were cc’d into it, could make the possible presumption that I, her mother, was feeling reassured and not, which was the reality, still stressed. With “presumption” in itself a whole other conversation of which I regularly refer to in way of a proverb [in a language I couldn’t possibly share on this blog!] ” I started to think more and more about the safety issues of using this terminology.

In this case, however, I think it could be fair to say that the health care professional reading this letter could have been led into this presumption because it clearly stated how I had felt (even, if it were in someone else’s opinion).

So what does the term “reassurance” actually mean, and when or where should it be used?

reassurance

Interestingly, reassurance is defined as an action of which removes someones doubts or fears, or it is even a statement that does the same.

An action? Really?

By now, I’m sure you can say that it was quite obvious that my doubts and fears were not acted upon. 

So my question is, should correspondence between health care professionals include the term “reassurance” unless the same has been specifically asked of the parent or patient? An excellent blog by Bronwyn Thompson, editor of HealthSkills discusses the benefits of reassurance in patients and she refers to Linton, McCracken & Vlaeyen (2008) who discuss whether reassurance is actually, reassuring. 

Simply put, for someone to reassure someone else, shouldn’t they both be discussing the topic of which caused the fear or doubt in the first instance? And surely a reassuring statement (such as in the letter) can not be given unless it is in fact agreed upon, with the person who had the feelings of anxiety?

Maybe a simple solution to my daughters letter would be to replace the noun “reassured” by the word “told”, for example – 

“I told mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.” 

Why?

Because if a health care professional perceives a patient to be reassured then there is a possibility that that next appointment will be pushed to the bottom of the pile. The urgency of such a situation may not be deemed as so, because the parent “feels” okay at this time…and the child is doing well.

Now, I do want to make one thing clear.

This issue I have is only around the way in which health professionals may communicate. It does not reflect whatsoever their  ability, skills or professionalism. Believe me, if I don’t like or trust a physician – I move.

Simple as that.

We are very lucky to have the health care professionals we have, although on the same note, quite unlucky that we know them because of the health we do have!

This blog is just a reflection of how communication could be improved upon in relation to medical data. To be honest, if I had my way, I would love to see all parents cc’d into every letter that go between health care professionals as they are, after all, the child’s primary carer. But for now, even if we just change a word or two, it can really help bridge the communication gap that seems to be getting bigger and bigger.

And if that word were only “reassurance”, I feel I myself would be reassured.

Reassurance is a feeling.

I think a patient or parent should always be asked at the end of their appointment do they feel reassured about the initial concerns they had. But I don’t think it is necessary, appropriate or even safe to include such “feelings” in a medical document.

Unless of course it is around the feeling of “concern”.

And that, dear reader, is a whole other topic. 

 

Posted on

Why it’s easier to smoke than get pain relief…

smoking

A few weeks back, myself and the hubby decided we’d take a much needed break from all the running around in work and so on the Friday, we jumped in the car with the kids, not minding the oncoming four hour road trip because we knew we’d be able to relax at the other end of the journey. Upon arrival, I was in great form to see our beautiful holiday destination but as soon as I started to get out of the car my mood took a bit of a downturn- my good old knees started giving out their usual creaks, which were then immediately followed by darting pains up my legs.

Now I know at 34 years of age, I am younger than most to suffer from arthritis, but to be truthful,  I have learned not to let it get the better of me. I have also learned that the best way to prevent a massive build up of pain is to take my medications as soon as I get the pain – and not wait until it’s too late! So off I went to the boot to get my medications out of the bag, only to realise to my dismay, that I had forgotten to bring them with me!

Immediately, I started panicking.  How would I get through the weekend with no pain relief? And as soon as I started thinking about how I would access the medication that I would need, I started getting anxious.

Was it because I had no prescription? No.

Was it a drug I couldn’t get as it had to be ordered in advance? No.

Was it a Sunday and the pharmacy were closed? No.

So why the panic?

Because the drug I use to help give me pain relief is a well known and well advertised over the counter medication, commercially known as, Solpadeine.  

(If you’re a pharmacist or have ever tried to buy codeine based drugs recently you will now know why I was concerned!)

So I found myself en route to a nearby pharmacy and just as I got out of the car, my husband seized the moment and quickly asked would I pick up a packet of cigarettes for him in the shop beside the chemist. Now he knows I hate the thought of him smoking considering he had a stroke only one year previous [aged 42] but I reluctantly agreed because to be truthful I wasn’t going to start nagging about it while we were on our much needed break away. And I was already anxious and in pain so I didn’t need any more unnecessary tension!

Sighing as I got out of the car, I decided to face my fears and chose to go to the pharmacy first, with that usual thought in my head “brace yourself!”

I knew I was going to get bombarded with personal questions, and only if answered correctly, would the transaction then be completed with the complimentary delivery of an educational safety lecture on the risks of codeine. I continued to wait in the queue, and the more I started thinking, the more my palms were sweating; the more my heart started racing, and the more I started thinking of what to say to the pharmacist.

I honestly stood there feeling guilty of a crime; that I hadn’t committed.

I started thinking would I just ask for paracetamol on it’s own because so many people are given this long term and with no hesitation. But I knew it wouldn’t have the same effect on the pain. Anyway, with paracetamol being the most dangerous element of this drug combination for my liver, wasn’t the codeine just putting on an additional risk for me getting possibly addicted, becoming irresponsible and overdosing on same?

Thinking about this, I knew myself well enough to know that I would never put my life at risk and so vowed to follow through on my request for pain relief.

As I got to the top of the queue, a young bubbly member of staff came over to me. I smiled back at her but I knew her expression was going to change quite drastically when I requested my choice of pain relief.

I was right.

Her smile disappeared, she lowered her tone and got very serious as she asked me what I needed it for. Other customers quickly looked away, but noticeably, still listened in. It was in this moment as she asked me politely what I needed it for, I felt the presence of societal judgement come upon me and without thinking, I blurted out – “It’s for my period!”.

It was now this poor girls turn to look away in embarrassment and she quickly mumbled the standard warnings that she was taught to deliver to customers who requested codeine based medications. As she took them out from underneath the counter and put them in a brown bag for me, I really felt awful for both her and myself for having to go through this process just to ensure that I firstly wouldn’t have pain over the weekend and secondly wouldn’t die of liver failure in the process. She was only doing her job.

I honestly hadn’t meant to embarrass the poor girl – I just wanted to get out of there as fast as possible and I knew I had reacted this way because I was simply embarrassed. I quietly thanked her, paid her, said goodbye and turned to leave.

At this point, I then remembered that I had to go to the shop for my husband to get his cigarettes. Filled with relief that that ordeal was over, I walked over to the shop and calmly asked the shopkeeper for 20 Purple Silk Cut. 

She then handed me my change & casually handed me one of the most lethal drugs ever created – without query, question or caution. 

As I walked over to the car, it hit me that something was not right about what had just happened. Upon walking into the shop, I recognised that I had no fears about asking for the cigarettes – knowing the most I’d get asked about was the weather (unfortunately I don’t get asked for ID anymore!)

Yet, in the pharmacy, for pain relief, it was a completely different scenario.

There and then, I wished the shopkeeper would question my husband every time he had to get cigarettes, the way the pharmacist had me, for codeine. 

While both nicotine and codeine are highly addictive substances, this is where the similarity ends.

One has some medicinal benefits. 

The other does not have any medicinal benefit. 

One is advertised on television and radio.

The other is not allowed to be advertised anywhere.

One, taken as directed, does not put one’s life in danger. 

The other, no matter what dose, puts lives in danger, always.

As with all drugs – there are risks. But with some, especially those which have no medicinal benefits – the risks can be detrimental. Cigarettes have to be one of the most fatal drugs on the market, with no proven medicinal benefits, and yet people still choose to smoke. Even after all the packaging is removed; all the advertisements are taken out of shops; the ghost of a kind and brave man, Gerry, talks about the terminal effects cancer has on him and his family – people still choose to smoke.

What drastic measure is it going to take to actually change the behaviours of a smoker?

What would happen if a shopkeeper put a customer through the same rounds of questioning for codeine – every single time they went to buy cigarettes?

Shopkeeper…[changes expression drastically and asks in low tones…]

“Do you know why you’re smoking?”

“Do you know smoking can [and now choose depending on customer…]  

  • Give you bad skin, hair , nails, teeth
  • Makes your clothes and breath smell bad
  • Take 10 to 15 years quality years off your life – breathlessness etc.
  • Increase risk of life threatening diseases like cancer, infertility
  • Have a poorer quality of life, fitness and health
  • Be a bad role model for your family and friends/children
  • Cause you to go without nice things because you waste money on cigarettes
  • To lose control over your life – smoking can dictate your daily routine.
  • Increase the work you have to do to keep your home and car clean.
  • Decreases the quality of the air in your home for your family and friends
  • Reduces self-esteem/ impact on how you deal with the daily stresses of life.
  • Make you die before you’ve done everything you’ve wanted with your life

I’m sure the shock factor if this did happen would be astounding. 

I can tell you, if people were asked these questions every time they went for cigarettes, they would soon start reconsidering their requests – like I had done. The feelings evoked in me that day – embarrassment, guilt, fear –  were very negative and I definitely would not want to go through it every single day. 

But I completely agree that it is the right thing to do.

Every person taking any addictive substance that can potentially lead to long term side effects or cause irreversible damage, should be advised to on it’s possible dangers. The pharmacists have our best interests at heart and that lovely staff member was doing her job, the way she was taught.

But I do not feel that this should just be limited to codeine or similar drugs in pharmacists – it should be implemented in all substances (especially those with no medicinal benefits) such as alcohol and cigarettes.

I believe if our nation were truly behind the challenge to create behavioral change in smokers – this method could be an option.

But in the real world, when there is the possibility of money to be lost locally or nationally, the challenges to create change in this area are nearly impossible. I think, even if a business case showed significant financial/time/life savings for health services due to a reduction in tobacco related illnesses because of an initiative like this, that it still would never happen – even if the savings were higher than turnover of sales of tobacco! 

I do think there is a lot being done to tackle the smoking issue but I truly feel a lot more needs to happen. I am now nine years off the cigarettes myself and it took a lot of effort for me to give up. My husband was forced to quit last year after his stroke, but unfortunately it was just too easy for him to start again. 

And I would like to see this changed.

I don’t know how it can be done, but I do know, that if you make someone feel guilty, embarrassed, afraid, sad or irresponsible a lot of the time they will want to stop associating with the thing that caused it in the first place.

As for my choice of pain relief  – I never promote codeine to anyone as a first choice of medication – it is highly addictive substance. I do however always promote the fact that we should always take our medication as prescribed, and on time – and not wait until the pain gets so bad it can’t be managed efficiently. I will always also promote the conversation between patients and health professionals about their medications and whether they work or not.

Pharmacists and other health care professionals are there to help us, not make us worse. But we have to be honest with them, to help them make the best decisions too.

There are of course so many more treatments that don’t involve medications at all and I would look into these too – I myself attend and run self management programmes for instance, and they can help put us in different mind sets about our pain or chronic conditions. 

At the end of the day, we’re all here to either get better or help get someone better, and so we all must play our part in being part of the solution, not the problem. 

For more information on quitting smoking: https://www.quit.ie

For more information on codeine: https://www.thepsi.ie

 [Note: For any medical professional /patient who may want to know why I take this drug. For me, codeine and paracetemol taken together works better than anything else I have tried. As well as my arthritis, I also suffer from long term bradycardia and asthma. Unlike my children, who take Methotrexate and Naproxen  for their own Juvenile Arthritis, I am much more limited in what I can take. Many of the heavier arthritic drugs like Arcoxia, just make me feel way sleepier than codeine does (bradycardia already causes this!) and it can’t be taken with my angina. Anti- inflammatory’s cause me to be wheezy. Because of this, we found a treatment that works – I get steroid injections into the joint from my rheumatologist, as the need arises, and I take codeine with paracetemol [i.e. Solpadeine], if required, 6 hours apart, twice a day at most- thus providing all the relief I need, without having any diverse side effects that impact on my daily life in a negative way. This combination works for me, right now, but I do not promote or recommend it to anyone else  – each of us are individual and that’s why we need to talk to our health professionals about same!]

Posted on

Overcoming PTSD…My Story…

heart children

 

This is how I told my story at Heart Children Ireland’s National AGM…

 

“Hi my name is Olive, and I am a mum of three girls; Micaela Nicole and Mackensie.  I was going to tell my story spontaneously , but every time I practised doing it this way, my emotions took over and I forgot where I was, so today I am going to read it out to make sure I don’t skip over anything.

We, as a family, come up to Dublin quite often as each of my girls see different specialists in Crumlin, including their cardiologist, Dr Coleman. Thankfully they’re all doing great at the moment but it wasn’t always that way. About a year and a half after my youngest girl, Mackensie was diagnosed with her congenital heart defect, I was diagnosed with Post Traumatic Stress Disorder.

Now I know you’re just in the door and probably wondering why are we starting with such a sensitive topic but we felt it would be good to do it now just in case any issues arose and people could chat to each other or ourselves about it at lunch time. Deirdre, our psychologist is thankfully here today also and is happy to talk to anyone that wishes to do so.

I myself am here today in the hope that my story can help others. I wish that another parent had told me back then that we all react differently to our situations, that it was okay to feel the feelings I was having , that I wasn’t alone and that that there was loads of help available out there for when I was ready, not just to talk, but to even admit something wasn’t right.

So here we go: before Mackensie was ever born I was worried that things might not be okay. I couldn’t say what exactly was wrong but my gut was telling me to stay alert. Anyway the labour was difficult, it took what seemed like a lifetime for her to cry and she wasn’t as pink as my other girls had been when they were born. I was worried but was told over and over again she was fine and that I probably just had the blues. So we went home but my anxiety rose as she couldn’t take her bottles for a very long time at a go, was sleeping nine hours at a time and wasn’t gaining weight. I brought her to A&E three times before she was twelve days old but both they and our health nurse at home said that it was me -that I just over-anxious, had possibly got post-natal depression and even that I was molly-coddling her. But something inside me told me something wasn’t right and so I fought my corner on the last go and eventually got her admitted. The next morning we were told that she had a slight heart murmur but they still sent her home to await an echo for six weeks’ time. Straight after being discharged I brought her to my GP (who was back from his holidays) and he knew something was seriously wrong. So he picked up the phone and sent her straight to another hospital which was where we were told she had three holes in her little heart and that she would need to have heart surgery in Crumlin.

In a state of shock and panic, when we got the call up the next day,  I ignored my gut instinct and instead took advice not to upset my other two daughters by saying goodbye to them. And so we just left, just like that. The poor little things, trying to adjust first to a new baby and then mammy, daddy and baby just disappearing. When we got up there I felt so bad for them and I wanted to ring them all the time but I was afraid I was going to upset them. I missed them so much but couldn’t say it out loud because I knew I had to stay strong.

So in this tiny cubicle on St. Theresa’s ward we stayed; staying strong and hoping, praying and wishing without realising how long we would eventually be staying for.   I had to stay strong before her surgery, during her surgery and after her surgery. The two things that stick out clearly in my mind were getting Mackensie baptised in this little cubicle before her surgery and having to learn how to do baby CPR on her before we got home.

It didn’t take long to meet other parents in the parents room, and it was surreal how we all learned the lingo quickly and were able to talk like doctors and nurses: conversations would go anywhere from discussing surgeries, types of heart valves to tube feeding and medications. But on the inside we were all feeling different emotions at different times; we were so tired, we were scared, we were frustrated and even sometimes guilt ridden – was it our faults our babies were sick, how are the other kids at home, how will we manage financially, why did this happen to us, why amn’t I worrying like all the other parents are? Our worst days were if a baby had lost their battle. No-one wanted to look at each other in the eye, because the fears and pain were too raw. And we had of course, to stay strong.

The day before Mackensie’s surgery, a great friend of mine now, that I got to know because her little baby girl was there, decided with my husband not to tell me about a little baby that had died that day, as she knew it would terrify me.

And she was right, it would have.

We eventually got home after a long six weeks stay and I soon realised very quickly that my safe haven of Crumlin was gone. I remember panicking on the first night because I wasn’t sure if the nib in the syringe actually counted as a milliletre of Frusomide or not!  I worried about who would be able to mind Mackensie if I got sick.   I had lost trust in so many people because of the so many battles I had initially to get her diagnosed and because my husband and other family members believed the doctors too at that time and not me,  I had lost trust in anyone else to mind her or my other girls too. I was so scared being so far away from the security that if anything went wrong we didn’t have specialists to hand.

I soon learned a few months later though in one of the fastest journeys of my life those ambulances can get there fairly rapid if they need to!

But I also realised I didn’t have the security of the parents in Crumlin to talk to. I remember one day when we had to be moved to another ward temporarily it had made me so upset that the kind nurse moved me back. I was so lonely and missed everyone so much that I needed the security of St Theresa’s to keep me sane. Back home I knew that people were trying to be positive by saying that “she didn’t look sick at all” or that “sure she’d be grand”, but I used to feel like screaming at them  because I had so many fears for her future.

And then my lovely friend that had protected me from my pain, before Mackensie’s surgery, rang me to tell me about her pain.

Her beautiful baby girl had died.

Words cannot describe the hurt, pain and utter heartbreak. My friends had lost their only baby during heart surgery. It was just so, so sad. And frightening.

So you would have thought after that a few months later, when we were told Mackensie wouldn’t need her next open heart surgery that I would have been so relieved and happy.

But no.

The silent fears suddenly came to a head. I went home, I closed all the blinds in the house, turned off the phone and for three days solid, I cried.

I had no idea what was happening to me and I felt so, so guilty. Why was I crying? Did I want my baby to be sick? What was wrong with me? I couldn’t talk about it to anyone because I felt like such a bad mother and my anxiety started getting worse until soon I couldn’t tell the difference between my gut instinct and worries. I didn’t want anybody to mind the girls and I started staying in, even quitting my job in the midst of it all. It all came to a head one day when I couldn’t get my husband on the phone and I had convinced myself he had been in an accident. One of my closest friends, Linda, came in to the house to calm me down and it was that day that I knew, I needed help. Because of my anxiety issues around the girl’s safety and that I may not hear them at night I refused anti-depressants or sleepers, which probably would have been a great help, so instead, I sought out counselling.

The first day was the hardest; my counsellor was sitting talking to me and I suddenly heard an ambulance in the distance. I made a bolt and just jumped out of my seat and ran out the door. He ran after me not knowing what was wrong and I explained that I felt something was wrong at home – he reasoned there and then that I would be quicker on the phone if I rang, and I did. Of course my poor husband, Fintan, asked why was I not in counselling and I told him about my fears. So for the first six months of counselling, I sat with my phone turned on, the door left ajar and the promise that Fintan would ring me if anything was wrong.

So, for the next two years, every Monday night, I met my counsellor.

And it saved me. It saved my family.  It saved my marriage.

I will never be the person I was before Mackensie was diagnosed but to be honest I wouldn’t want to be.  I still do get the odd twinge of anxiety every now and then, but I now have the tools to cope with it and so much more now. And I know blaming hospitals or anything else for that matter does not help…it only builds up the anger inside. Being proactive and making wrongs right does help though and it is this reason why I am sharing my story with you.

Recognising you may not be okay is the first step. For me it was the anxiety, anger and guilt but for others it may be the complete opposite. Talking is the next step. Talk to a friend, family member, GP…you may be surprised that they already know that you are in a bad place. Next get help – figure out which is the best way for you to get treatment by talking to your GP or psychologists like Deirdre. Know that the reason you are feeling this way is because you are trying to stay strong in a really stressful situation and sometimes when the calm after the storm comes, the real storm is only starting for you. My counsellor always told me not to be too hard on myself and I’m here today to say the same to you guys – Go easy on yourselves, know it’s ok to feel the way you’re feeling and talk to one another.

Thanks so much,

Olive x”