14 Ways to Cope with Dyslexia

Uni, Well-being

As a young child, I always knew I was different. I couldn’t pronounce certain words,  couldn’t spell and I never understood what I was reading. Despite, having a private English tutor my Dyslexia was undiagnosed, until I went to college.  Although, the teachers picked up on it my parents did not have the money to pay for a test. Dyslexia can be daunting and can go undiagnosed for a long-time impacting your confidence and mental health.  This post is to help you or a loved one deal with suspected or diagnosed Dyslexia.  I hope, some of these tips will also help you even if you’ve stumbled across my blog and are not Dyslexic.


1.The Power of Colour

Colour does not help all Dyslexic people and even if successful each Dyslexia person may have their preferences.  However, a cheap tool – is the use of highlighters.  I find yellow and blue help emphasise text.  Furthermore, tinted overlays can reduce visual stress but may not be allowed in exams. One way around this, if purchasing tinted glasses but this test is not typically funded by DSA.

 

 

 


2. Planning

It can be appealing to start all your assignments at once, but the secret behind a Dyslexia student with high grades is planning.  A great tool is mind mapping software like Imindmap.  Dragon is useful to write up your work for you to help you plan your time and assistive technology to turn text to speech.


3. Get all your ideas out first

If you’re Dyslexic, it is likely you are creative.  I find that getting my ideas out and referencing my work at a later date (whilst, saving them) helps me concentrate for longer. By working this way you do not spend your time reading the entire book/ journal articles.  Also, if there is a flaw in your idea you will soon identify it and can change it or adjust your argument.

Creativity

4. Record Lectures

If your University record lectures, utilise them –  to help you remember content. Alternatively, you can buy a recorder for as little as £20 from Argos or Curries.


5. Apply for DSA

Once you’re diagnosed with Dyslexia, you can apply for Disability Study Allowance and you should be entitled to a Dyslexia tutor. I have to admit, I have found mine more  for exam preparation than assignments. However, it is still free useful advice you can access.

disabled


6. Reverse Sentences

A very useful tip I found was that reversing your sentences can’t no only help reduce word count but make your sentences more fluid. Of course, your writing style will depend on the type of course you are on but I find this works for Business related courses.


7. Use a Successful Structure Again and Learn from your Failures

If you scored highly on a reflective assignment or a report use the structure for a structure in the same format. If you not score so well, try and ask a friend who scored higher than you and identify the differences. If you are an introvert don’t worry.  Try and get extra feedback or someone else understand your feedback for the future.


8. Write with the Word count in mind

Many people will recommend that you should write your work and then cut it down your draft later. I find this just doesn’t work for me and causes stress and anxiety. If this sounds familiar try breaking down the assignment and the weighting of marks and allocate a rough word count for each section and try sticking to it. By doing this, I find that I am continuously proof reading my work and I am not cutting out unnecessary information impulsively.

Wordcount


9. Start by Reading the Grading Grid

I have achieved many A and A*s at University in my modules which I think is heavily attributed to breaking down the grading grid and what is expected of you for assignments.  This may not always be possible so try and look for hidden clues in a brief.


10. Hire a Part-time Tutor

Hiring a tutor can help you in times when you are really struggling.  I know all too well hiring a tutor can be expensive.  In the U.K a good website to look on it Tutorful (previously known as Tutora) because you do not need to pay a fee to receive the tutors detail and can pay on a credit card if you need to.  You also can have a free practice lesson.  When I am really struggling I pay a PHD student a rate of £25 per hour.

The benefits of getting another student to tutor you is they have recently been in education, and if they are fortunate to be at your educational institution they will understand how your tutors mark.


11. Get to Know your Lecturers

Taking 5 minutes to get to know your lectures can go a really long way. By them liking you, they will make time for you and let you book short 1-1 appointments to answer any questions you may have. As their time is precious, the best thing to do is write a list of questions to show you have prepared.

lecturer


12. Start a Blog

You may be reading this with one raised eyebrow – and I don’t blame you. When blogging was a requirement for a University module I went in Morgan meltdown mode. Not MORE writing and reading. However, I have found that by writing a blog I use a different style of writing which makes it not as a daunting task when assignments arrive.


13. Use Dyslexia as a Strength

It can be hard to get past the first stage of interviews for placements when you must overcome psychometric tests.  A still a massive barrier for me – what I have learnt is a big thing I was missing was asking for reasonable adjustments. When I hopefully get invited to some interviews and pass a couple I plan to use Dyslexia as a strength.  After all you are able to think out of the box, you overcome challenges on a daily basis like being resilient.

dyslexia strengths


14. Remain Positive

 Having a positive attitude won’t be able to make reading and writing y easier but will show you are committed person to your studies/ working and that you are trying to succeed.


Do you want more information about Dyslexia? 

You can contact The British Dyslexia Association confident helpline  0333 405 4567.

Sharing is Caring 

No one should feel that they are not worthy or not intelligent enough. Please share this post to help Dyslexic people.


Have your Say

Are you Dyslexic or support someone who is? Do you have any good study tips? – If so,  why not share them below?


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Thanks for reading,

Lots of Love

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7 Reasons to Beach it Benidorm

Travel, Uncategorized

Benidorm, in the Costa Blanca region,  is Spain has been one of Europe’s hotspots for decades.  There is something for everyone… if you have not yet discovered it, here are 7 reasons on what you are missing out on.


1.Glistening Beaches

Two beautiful clean beaches in Benidorm are Levante and Poniente. Poniente is the longest beach, but less crowded.  Therefore, from a parent point of view it is easy to keep an eye on the kids.  If you love to sunbathe or want to give the little ones some shade, you can rent an umbrella and sunbed for the day.  However, it is recommended to take your own drinks because there are less bars near the beach.

levante

Levante beach

Levante on the other hand, is filled with bars, restaurants and shops, perfect to pick up a refreshing drink or ice-cream. However, be aware it may be slightly tougher on small feet in the water, as it is rockier.   Whichever beach you choose you are guaranteed great panoramic views including Benidorms’ skyscrapers.


2. The Exquisite Coves

Benidorm has more than miles of sand. Tio Ximo and Almadrava coves are perfect quite spots to relax or snorkelling, located at the north end of the coast.

 


3. Balcon del Mediterraneo

The best view of Benidorm can be found between Levante and Poniente. Balacon del Mediterraneo also known as the castle viewpoint. The view is particularly stunning at night, with plenty of restaurants and cafes to grab a quick bite to eat.

the castle point


3. A Super Family-friendly Holiday

Benidorm is perfect for a family holiday, due to the activities it has to offer and hotels.

Hotels

Magic Aqua Rock Gardens is one of the most family-friendly resorts in Benidorm. The quirky hotel has Water Park connected and extensive entertainment activities for different ages. If some alone time is sought, adults can relax on the roof top bar.

RH Princesa is perfect for families who want a slightly longer stay. You can take the stress of cooking away by opting for all-inclusive or half board booking based on a minimum of 7 nights. This hotel is especially attractive to young children, with extensive activities, a pool, a playground and a bouncy castle. Adults can relax on the onsite-spa and this hotel even offers a childcare service onsite… which enables you to explore some bars in the main strip – Calle Gerona to have a boggie and  let your hair down.

aqua

Aqua magic rock gardens hotel

Activities

Terra Mitica Theme Park

Terra Mitica is home to the longest wooden rollercoaster in Europe- Magnus Collusus. The amusement park is separated into different countries and is full of fun and thrills for the little ones. However, it is only open during the summer months (typically from April/May) and closes down around October time.

Mundomar Zoo 

Mundomar adjacent to Aqualandia, opens its doors from the 18th March.  The zoo puts on live parrot, dolphin and sea lion shows – guaranting day of smiles. If you are keen animal lovers you can even get up close and personal with the animals. You can also get some snaps with the animals and have a meet and greet with exotic birds.  For an extra cost you can become a trainer/ keeper for the day , feed penguins or have a dip with the sea lions.

mundo


4. Waterparks

If you fancy a day of wild splashes you will not be disappointed.  You can plunge into water at Aqualandia or Aqua Natura catching adrenaline on umpteen slides.   Then you can relax in the natural areas of have a look around the restaurants and shops.  Aqua Natura also shows a sea lion show daily.


5.The Sunny Climate

You can expect Benidorm to be relatively hot all year round, due to the mountains protecting it.  If you want to get a strong dose of vitamin D then August is the best month to visit, reaching up to 25℃ .  The coldest month you can expect is January at around 12  ℃

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A sunny day at Poniente beach


6. The Cuisine

To try some authentic Spanish cuisine, head on down to Benidorms’ old town.   To find some tasty tapas look for Cadillac.    For a more luxurious experience a must is Ulia restaurant by Pointente beach.  The restaurant has mouth-watering Paella and fresh salads.  To keep those taste buds alive you can wash it down with some white wine or Sangria.

Do you have fussy children? Fear not, there are many great pubs that cater to the British palate.  Good choices are Corky’s Penny Farthing and Seven Stars. These restaurants also cater for special dietary needs, offering gluten-free and vegan/ vegetarian options.

 

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Are you still wondering what is great about Benidorm?

7.Great Value for money

Benidorm is notoriously known for being perfect for those on a budget.  If you really want to save the pennies it is cheaper to visit in the following months; January, February, March, November and December.

Now you know why Benidorm is  perfect for a family-friendly holiday – why delay?

         Book Benidorm here


Have you been to Benidorm.. and have any tips?  Why not join in the fun and share them below.

The Agonising Truth Exposed: Chronic Bladder Syndrome

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, Well-being

Interstitial-Cystitis-

Hey Guys,

I hope you all had a lovely Christmas and Happy New Year!

After being offline along time, here is the one post,  I was nervous to write about – fearing people would have the misconception, I am dirty.

I feel it’s time to share a condition that restricts my quality of life.  Interstitial cystitis (IC) also known as chronic bladder syndrome is NOT  a STI or a UTI.  However, bacteria has been linked to a cause of bladder inflammation.   Being the queenof UTIS and internal inflammation remained a mystery, until recently. Though, it  use to be predicted to be down to my bladder being about the size of a £2 coin.  If you have  never had long-term bladder pain, I sit here in envy. 

Now, I welcome you to my story – the girl who lives on antibiotics. 

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“Antibiotics, the best friend or fiend of an IC warrior?”

Some argue, antibiotics do not necessarily solve IC, which explains why I feel in high levels of pain every day. However, some GPS claim they are essential, to cure it or…. in my case even prevent UTI’S, that worsen it.   For many years I took Trimethoprim, Ampicillin and Nitrofurantoin with little or no relief, even when infections did not exist. Being told in so many words , to abuse antibiotics, it is no surprise I have a weaker bank balance and now  have now become immune to these types.  Typically, I can be on a course for 6-12 weeks at one time.  Recently, I have moved on to three new types of antibiotics on a 6 week course. The pain got so bad I missed my University exams, but now I am figuring out what I can do about this, battling on.

“I don’t give up that easily – with love your swollen bladder”.

I normally finish the first two-three weeks of antibiotics and don’t feel any better.  The first week, I will still be spending my life in bed, wondering if the pills will ever work or will I be dead by tomorrow.  I know this sounds dramatic. Although, the hospital keep ranting on how I could be well on my way, to developing kidney failure. IC and UTIS are persistent, especially if you have had them a long time – in my case 6 years of misery.  It can have as much persistence as a guy you have cut out your life and then drops you that text ‘Hey,bby girl how are you?’ and your like enough already, please.

“Chronic bladder syndrome plays trick on you like the house of horrors”.

Regularly, when I am watching TV, a shooting strike of abdominal pain arrives. Once, this passes I get settled and comfortable and then I realise, I need the toilet. I take a wee, and that’s it I am gasping for air, like there is no tomorrow.Urinating has more sting than a bee. It is like pouring acid into an open wound. I get up struggling to waddle down stairs, to glug down water and send my mum off to buy pain relief…

For an hour or two, if I am lucky I may be numb… ONLY if that feeling could last forever.  I think a day, where I can relax.. Then the pain strikes again, and as I swell the pelvic pain becomes unbearable.  I try to take my mind off it and take a warm bath to sooth body. It does, until I get out.  I pull a funny expression, as if an object is stabbing my urethra, thinking – “why, why me?”

When the pain rife, I cannot sleep or function for many days”.

Awake most nights in throbbing pain, I hobble to the toilet with relief to empty my bladder whilst anticipating the agony to come.  I climb back into bed to realise I hardly emptied my bladder and I need the toilet again.   “I look down at my body with anger and think seriously? – Like it is going to respond to me and say sorry Morgan, you are just an easy target. Reluctantly, I get up once again squeezing my bladder like I would a fresh orange for fruit juice, which can occur up to 10 times in one night.

Finally, I fall asleep anxious the next day it will be worse. I wake up, debating if I have enough energy to go out. Normally the answer is no, my insides are on fire and more often than not I do not want to leave the house.  I am to  scared to go out – scared that if a toilet is not nearby I will wet myself or have to immerse myself in a bush.  I lay back down flat thinking OK, things will get better but –  deep down I know I am more complex case. I have multiple food allergies, which if I am not careful – encourage the mast cells to release histamine and mistakenly attack my bladder.   Eating and drinking like many others, put pressures on my bladder. Furthermore,  I never know if a UTI has returned or if it the IC symptoms. My dip tests always must be cultured before this can be determined.

“Cystoscopy Round Two”

I recently had a second Cystoscopy, whilst I underwent other procedures because I had been showing high levels of blood in my urine for many months. The first one, I had two years ago despite the pain, apparently was relatively normal. So, I had a bit of a shock when the Doctor spurted out  I have a defect in my bladder lining, irreversible damage, internal bleeding and scaring and that  I never have a normal bladder again. On another 6 week course, I also await bladder installations.  The biggest bombshell of them all, was, I must restrict my diet even further.   Ensuring, I am also on a diet that is low in histamine, acid, oxalate and potassium.  In that moment,   I felt like I was going to turn into a restricted herbivore – with my mother on guard, the 24.7 FOOD POLICE, as I call it.

“IC makes you feel like, you will never be happy again”.

As the symptoms are so similar to an infection and there pretty much 24.7, I always think how long to the next round of pain…. Worrying it will be back sooner than it should. I missed out going out on New year but I want to focus on a couple of helpful blog posts in the next few weeks to endeavour to inject positive vibes back in me.

Do you suffer from IC like symptoms?

If you had bladder symptoms lasting longer than 6 weeks, you may be suffering from IC and should see your GP.  I know its hard but you really need to try and stay hydrated to prevent migraines. Imperial Colleges’ guide is useful to help you manage IC like symptoms.

Have your Say?

Do you suffer with IC like symptoms and have good tips to manage it – if so, why not share them below?

Thanks for reading,

Lots of love,

my name

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5 Ways to have a Productive Day with a Chronic Illness

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses, University life

“Having a productive day is very subjective; what is productive for one person is not for another”.

Some days, I find waking up, washing and eating productive. Others assess,  I am being productive when I  do University work.  What I have noticed though – is we all have tasks that need to be completed and this can send us into panic mode. The vicious cycle, of where to start and where to finish has a ripple effect – like a child who got denied candy at the fun fair.

 If you are someone sat there reading this with a chronic illness, I am sure you have an inkling of the cycle I am talking about. If you don’t well… I sit here, in envy.   What I am going to call the ‘ torrential storm cycle’ makes you question which direction to go in first.   Anxiety and stress are no strangers, crawling around your body, taking its toll , physically and mentally.  This post is designed to stop you in your tracks, so you aren’t continuously interrogating yourself about ability and self-worth.

“I spend 90% of my time in bed, but a chronic illness does not mean accomplishing your goals are not possible”.

Achieving those goals may just take comprise, planning and longer than you anticipated.


5 Ways to have a Productive Day with a Chronic Illness

1. Evaluate tasks ft. the spoon theory

If you haven’t heard of Christine Miserandino’s Spoon theory , it is a great place to start to help you have a productive day.  The theory in a nutshell, is that anyone who is chronically ill has 12 spoons each day (each one resembling energy) and spoons are exchanged for tasks.  The amount of spoons exchanged will depend on factors such as the length of the task and how strenuous. The point here, is spoon must be used wisely so you don’t burn out. By ordering tasks by importance you can identify what needs to be done on what day and start to put a plan in motion.

spoon-theory-e1510325926400.jpg

 In reality, you may find executing a plan is not always possible. However, the spoon theory gives you a general consensus of how much you can get done in a day.

You may find – once you start having a productive day you are at the opposite end of the spectrum. At Uni, I get told a theory is just that a theory. I am taught to challenge theorists view. So it may not be a surprise to hear I wasn’t a firm believer of the Spoon theory at first.  I was so productive one day I felt on top of the world. I couldn’t believe my eyes. I had completed an exam, handed in an assignment, found a job, booked a flight, travelled home from Uni and packed for a holiday and cuddled my little bunny.

Shortly, after this semester came to a close – I realised I used the reserve of spoons for months. I had to fly home 3 weeks early from working abroad, quit the job I found and was  behind in every subject at Uni. Barely, attending lectures and hospital appointments.  What I am trying to emphasise, is pushing yourself one day really can have a detrimental effect on your health.

“You need to work out what is realistic to get done in a day for YOU”.

 Which takes me to by next point…


 2. Break down tasks

 Breaking down tasks makes things more manageable.  Something,  I am training myself in like a disobedient dog. I am one of those people who seeks to think holistically to even do a task.  However, breaking down tasks can relieve stress, because you know you are achieving something – which has got to be better than nothing, right?

goal

I have found people have been more understanding about my illness when they can see that I am trying rather than wallowing in self-pity.  The amount you need to break-down a task will depend on its complexity. It may be a case of trial and error, but you know your body better than anyone in time you will have this down to a tee.

 If it’s something academic, you could try and break things down with titles and research areas and tie the ideas together later.  You may not get the best grades you are used to due to time constraints.  However, at least you will pass and can try and work harder when you are feeling a bit brighter on future work. If the task is practical, like cooking, you could do prep at a certain time and then cook later in the day.  Or if you’re a little bit cheeky – ask someone to help you to make the task manageable.


3. Follow your Body Clock

Most people would say, sort out your body clock first and foremost. It may work, but it is something I have been trying to do for over 10 years. My body just likes to be up during the night. The fatigue and pain is more manageable after I have digested by one meal per day.

“To have a productive day you must follow your natural body clock”.

You don’t want to set yourself up for failure by taking a U-turn and trying to achieve tasks when your energy levels and pain threshold is low.

body clock

“Remember you can always move tasks to another day as long as you’re motivated to accomplish them”.


4. Relax… just not too much

Whether you have a chronic illness or not, everyone should take time to wind down.  If you’re fortunate enough TAKE a bath, or go and visit someone who does! Watch a comedy, listen to music or sit in silence, do what works for YOU. I am not saying you are not going to wake up still feeling fatigued because you probably will BUT subconsciously your body and mind is still getting a valuable break and you get a hint of happiness.  I find relaxing whilst doing a task slowly usually gives me the right balance. However, this may not work for everyone.

“Just remember, don’t relax too much or you won’t get anything done”.

bath.jpg


5. Relieve stress with a pet

Patting pets are proven to having a calming effect on humans (Rodriguez, 2012), which may help you to think more clearly and be more productive! It is ideal if you own a pet and go and give them love when you are stressed and they are in a good mood. If your pet is moody, trust me try hugging your friends’ pet or the other four tips AND come back to this one later.  When my pets are hungry they treats me like food and it makes me feel rejected and has the opposite effect.  If you cannot keep an animal, I suggest you look out for the nearest dog on your walks or go visit an animal shelter. That way you can have your rare day out, killing two birds with one stone.

 


Thanks for visiting Brains & Bodies. I hope I have shed some positive vibes on how to have a productive day.


Sharing is Caring 

I would love if you shared this post to help others with chronic illnesses have a productive day – everyone deserves one! For some reason all my shares reset back 27 from 84 , but please keep sharing. 🙂


Have your Say

Do you have any tips how to have a productive day? – I would love to hear them below.


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Over and out,

my name


References 

Rodriguez, T. (2017). Pets Help Us Achieve Goals and Reduce Stress.

Spoon theory (2017). The Spoon Theory written by and spoken by Christine Miserandino. [online] Available at: https://www.youtube.com/watch?v=jn5IBsm49Rk [Accessed 10 Nov. 2017].

 

Through the Nutritionists’ Eyes: The Ehlers Danlos Series

Guest Posts, Invisble Illnesses, Peeping through the Keyhole, Physical Illnesses

Hola Amigos,

When I started Brains & Bodies,  I did not want to accept  guest posts from practitioners, mainly because of the challenges I had with them. Sara Russel is an exception, as she is a practitioner diagnosed wit HDS.  Sara shares my goal to raise awareness about Ehlers Danlos Sydrome/ HDS.   You can look forward to Sara and  I,   collaborating  on Nutrition in the Ehlers Danlos Series.

Sara post is not short, but is certainly a worthwhile read. Time to pass you over. . . See you soon

my name


Common Ethical Issues People with EDS/HSD Encounter in Healthcare

This guest post aims to provide a sort of exposé of some of the ethical issues (both deliberate and unintentional on the part of health care providers) that people with EDS/HSD and other chronic and complex conditions encounter. Additionally, it offers some reflections on how both patients and care providers can work towards an alternative paradigm and different strategies.

In a sense, because of the extraordinarily complex, multi-faceted and poorly understood etiology, symptomatology and complications inherent in the Ehlers-Danlos Syndromes (which I’ll refer to here collectively as “EDS”) and the relatively newly-coined Hypermobility Spectrum Disorder, the EDS/HSD population can serve as the ultimate example of how often-hidden flaws in the health care system can have an amplified effect on people with chronic and complex health conditions. This piece focuses on selected of ethical problems, while recognising that the impact of course is much more vast.

The information contained in this post results from extensive reading of the medical and scientific literature, personal experience as a patient diagnosed with Hypermobility Spectrum Disorder, clinical experience as a nutritional professional working with a diverse set of chronic and complex health conditions and interviews and conversations with patients with EDS as well as health care providers, both those that are specialised in the treatment of EDS and those who are not.


Common complaints I hear from people with EDS/HSD about their past or present care

“The doctor couldn’t account for my physical symptoms and wrote them off as nonexistent or psychological”.

Depression, anxiety and related disorders, while not specific to EDS/HSD, are more common in these groups than in the general population (Bulbena et al. 2017). The reasons are complex and are likely a combination of co-causative factors (hypermobility is postulated to have effects on the nervous system and the gut-brain axis that profoundly affect emotions), effects of symptoms (pain and fatigue can definitely cause anxiety and depression) and perpetuating/aggravating factors (depression and anxiety increase pain).

Iatrogenic factors, including over- and under-medication, delay in diagnosis, inappropriate medications and more, can cause varying degrees of anxiety, depression and other symptoms, including post-traumatic stress disorder.


“I was denied pain medication when in excruciating pain and was treated like a drug addict”.

EDS and HSD patients often suffer from a high degree of pain which may not be easily recognised or validated. EDS patients frequently report going to the emergency room for a painful dislocation or subluxation and being denied pain medication even after describing debilitating pain. Uncontrolled pain, especially frequent or chronic, can have a profoundly negative impact on quality of life and can cause severe emotional and psychological distress.

“I was over-medicated with pain medications that didn’t lower my pain but only gave me side effects, and my doctor refused to consider any alternatives”.

As the president of a non-profit that connects EDS patients with EDS-focused medical providers noted in a personal conversation, a large percentage of patients with EDS lack the receptors to make opioid pain medications effective, yet these remain widely prescribed for pain management, and often patients become addicted to the medication while continuing to live in pain.

op

She described to me her experience of supporting EDS patients who experienced opioid addiction and uncomfortable side effects, including exacerbation in digestive symptoms (poor intestinal motility, constipation, gastroparesis, etc.), personality changes, reduced judgement and reduced cognitive functioning (increased “brain-fog” – which is already a concern for many hypermobile individuals in the first place). Some of these patients, she told me, have gone through painful withdrawal symptoms and required a lot of medical and emotional support to overcome their addiction. It is impossible to estimate how vast this problem is, considering that many people with EDS/HSD struggle with severe pain yet do not have a diagnosis.


“One or more health care providers exploited me financially on the basis of my poor health and desperation for relief”.

Unmanaged or poorly managed symptoms can make people with EDS/HSD the target for deliberate or unintentional exploitation by health care providers promising or implying all kinds of miracles, and even suggesting that EDS is caused not by genetics but by other factors that can be “cured” easily (of course, with the specific product that the company or individual is trying to sell, or a specific treatment modality the person or company offers. Exploitation of people with EDS may take the form of “friends” pushing the latest cure-all essential oils, proprietary supplements, detoxification or cleansing programs, etc.).

business-money-pink-coins

I’m not saying by any means that people with EDS/HSD can’t benefit from the product and service categories listed above. However, I advise people suffering from EDS/HSD to be wary of any health care practitioner, product or program that offers an easy or miraculous “solution” or a one-size fits-all approach. It is in fact very important for practitioners to approach every hyper-mobile individual as a unique person who requires an individualised plan to manage symptoms and improve or maintain their quality of life, and of course, who can help set realistic goals based on the person’s unique and changing conditions.


Solutions: What Practitioners and Patients Can Do

Why Health Care Providers Must Take a Complete Health History

A patient-centred, multi-disciplinary approach to care is critical. The health care provider must understand their patients’ health history and family history, and this involves careful listening, research and often a referral to an experienced specialist if the hyper-mobile patient is still undiagnosed.

Understanding that physical health problems cause emotional distress

Those who suffer from chronic physical symptoms that impact quality of life significantly may also have some anxiety and/or depression. Often, however, this is the only diagnosis they have, as if nothing else were wrong. Unfortunately, this implies that the physical symptoms don’t really exist. The patient knows better. Patients who are in pain and are told that she suffers exclusively from a mental illness will neither be fooled nor trust the physician.

Yet having physical pain and debilitating fatigue that others don’t see or understand is enough to trigger anxiety or depression in an otherwise well-adjusted person. As many hyper-mobile individuals describe, each in their own way, the true problem is very clear to them in their bodies,but nobody sees or understands it. Labelling a complex set of physical and emotional symptoms with a psychiatric diagnosis will only further the mutual reinforcement of physical and emotional symptoms.

eds

Ultimately, being treated this way over and over again leads to a general mistrust of healthcare, which may in turn increase one’s vulnerability to exploitation by predatory marketing, which often does invest resources in making patients feel understood, not with the aim of solving a problem, but of selling a product or service regardless of its efficacy. The only real way to counteract this is for allopathic and holistic health care practitioners to listen to the patient and to collaborate with each other.


High Ethical Standards and an Individualised Approach

High ethical standards and a bio-individual approach to health must go hand in hand. If your practitioner doesn’t have high ethical standards, you may find yourself buying large packages in a moment of weakness, or arrive home from each visit with loads of supplements that don’t make much of a dent.

If this has ever happened to you, it doesn’t mean that your practitioner intentionally exploited you. It’s more likely that he applied common marketing techniques that brought him money without improving your health. The money-centred model of care doesn’t work well with complex health cases. Nonetheless, most practitioners really believe in their process, in their protocols and in the products they sell.

Practitioners working or wishing to work with people who are hyper-mobile should bear the following in mind. Hyper-mobility is a multi-factor problem with complex etiologies and consequences, and exists on a very broad spectrum, and oversimplifying it is both disingenuous on the part of the person doing so and stigmatising for people who are affected by a complex and non-fully-remitting hyper-mobility.


People with hyper-mobility should be wary of statements such as:

“I am better (or healed) because I did X, so you can get all better too if you’d only stop doing Y and do X like I do”

“I have (or had) a patient (or client or customer) with Ehlers-Danlos Syndrome who went through my program (took X supplement or medication or essential oil or protocol, etc.) and is now fine, so what are you waiting for?”

“All symptoms of Ehlers-Danlos Syndrome match perfectly with Lyme disease (or mold illness or mercury poisoning or copper dysregulation, MTHFR, etc.), so your diagnosis must be wrong, and I can fix it with X.”

redYou get the idea, right? This may not be a comprehensive list of red flags to look out for, but it’s a start. You may even have heard variations on several. I’m not saying that a person with Ehlers-Danlos Syndrome can’t be incorrectly diagnosed, or is exempt from also having another condition with similar symptoms.

In fact, hyper-mobile people sometimes do get Lyme disease or have mercury poisoning or dysregulated copper, but implying that EDS isn’t a distinct medical entity is ignorant and dismissive at best, predatory at worst, but probably most often some combination of the two.


A Paradigm of Service

Both allopathic and holistic health care providers should approach their work from the standpoint of service to the patient or client. All too often, allopathic medical care feels rushed and non-empathic, while holistic care can feel to salesy or gimmicky. Neither of these approaches works well for the patient.

Ultimately, patients with complex illnesses, including EDS/HSD, do best in a multi-disciplinary situation where there is a patient-centred approach to care and an attention to the individual history, symptom picture and the elements that bring relief or trigger discomfort. The constellation of dysfunction in the body can vary from patient to patient, but clearly, an attention to each patient’s unique situation can help determine which practitioners are best suited to be part of the care team, so that the best possible support is offered to the patient.

About the Author

Optimized-Sara Russell

Sara Russell is a Nutritional Therapy Practitioner who works remotely with clients worldwide, specialising in complex cases. Sara comes from a family with a high prevalence of joint hyper-mobility and related medical conditions. She resides in the Tuscan countryside with her husband and six-year-old son. To learn more about Sara’s work and read her blog click here.


Related Post on Brains & Bodies 

My Invisible Illness ft Tramadol: The Ehlers Danlos Series


Selected Bibliography

Bulbena A, Baeza-Velasco C, Bulbena-Cabré A, Pailhez G, Critchley H, Chopra P, Malloquì-Bagué N, Frank C, Porges S. 2017. Psychiatric and psychological aspects in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:237-245.

Castori M. Ehlers-Danlos Syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular and systemic manifestations. ISRN Dermatology Vol 2012. Article ID 751768, 22 pp. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Tinkle B, Levy H Grahame R, Malfait F, Hakim A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin Med Genet 175C:148-157.

Celletti C, Camerota F, Castori M, Censi F, Gioffrè L, Calcagnini G, Strano S. Orthostatic intolerance and postural orthostatic tachycardia syndrome in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type: neurovegetative dysregulation or autonomic failure? 2017. Biomed research international. https://www.hindawi.com/journals/bmri/2017/9161865/. Accessed May 9, 2017.

Chopra P, Tinkle B, Hamonet C, Gompel A, Bulbena A, Francomano C. 2017. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:212-219.

Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. 2017. Gastrointestinal involvement in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:181-187.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Chronic fatigue in Ehlers-Danlos syndrome–hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:175–180.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:168-174.

Hamonet, C. Maladie ou syndrome d’Ehlers-Danlos: une entité clinique, d’origine génétique, malconnue, dont la rareté doit être remise en question. http://claude.hamonet.free.fr/fr/art_sed.htm.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org.

Henderson Sr. FC, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano CA, Ireton C, Klinge P, Koby M, Long D, Patel S, Singman EL, Voermans NC. 2017. Neurological and spinal manifestations of the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:195-211.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org. Accessed Dec. 28th, 2016.

Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, Fournel-Gigleux S, Frank M, Ghali N, Giunta C, Grahame R, Hakim A, Jeunemaitre X, Johnson D, Juul-Kristensen B,Kapferer-Seebacher I, Kazkaz H, Kosho T, Lavallee ME, Levi H, Mendoza-Londono R, Pepin R, Pope FM, Reinstein E, Robert L, Rohrbach M, Sanders L, Sobey GJ, Van Damme T, Vandersteen A, van Mourik C, Voermans M, Wheeldon N, Zschocke J, Tinkle B. 2017. The 2017 international classification of the Ehlers-Danlos Syndromes. Am J Med Genet part C Semin Med Genet 175C:8-26.

Seneviratne SI, Maitland A, Afrin L.2017. Mast cell disorders in Ehlers-Danlos syndrome. Am J Med Genet Part C Semin Med Genet 175C:226–236.

 

5 Challenges Blogging with a Chronic Illness…

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses

 with a sprinkle of advice.

Hello, there 🙂

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If you haven’t read my other posts, welcome. It’s not a secret anymore I am a spoonie. I am Morgan Isabella Shaw, a 24 years old that suffers from Ehlers Danlos Sydrome. However, recently when I was procrastinating, I remembered I haven’t confessed how challenging it is to blog when you have a chronic illness.

I will admit I find multiple things an uphill battle. Cooking, washing myself, walking, relationships and blogging is no different. Actually, it doesn’t happen – unless I am blogging from bed. Even then, five minutes into starting a post I tend to experience a  flare up and struggle to finish writing it that day.  As, I throw my laptop down, I feel disappointed in myself I have not met the strict self-inflicted deadline.

If you land on my homepage you will notice I endeavour to publish one post week.

One post a week – is that it?

Many fire back at me with an eye roll or one raised eyebrow. This made realise how many people do not understand how many challenges are behind the scenes for me to keep on generating posts.This post will let you walk into another part of my mind and reveal 5 challenges a chronically ill person may face when they decide to become a blogger…


5 Challenges of Blogging with a Chronic Illness

1. Blogging is Addicting

 I don’t know if blogging is addicting for everyone or if it just applies to me because of my addictive personality.  I use blogging as a natural remedy for my clinical depression so I try to do it as much as possible to release emotions.

The problem with this is, I have found is I end up not getting other important things done. For example,  I sit very confused looking at University briefs, because I can’t find a private tutor this year –  so I turn my mind to blogging instead.

blogging-for-business

If you find yourself in this position you need to like me – try and snap out of it and  make a loose time management schedule, so you can do everything.  As I move through the academic year I am aware that my blog is going to have to take a backseat if I am to pass it, not because I am abandoning you! I also have to admit the more I want to blog the more I shut myself away from my friends. However, I don’t want to give up blogging.  For once I am starting to enjoy one thing again, which in turn makes me feel less suicidal on the whole.


2. Limited Energy

With most chronic illness comes chronic pain, fatigue and brain fog which makes it difficult to concentrate.  I spend every spare second I have whether that be on the toilet or public transport thinking of new blog ideas and content. The issue associated with this is, my brain goes into overdrive – I  now don’t know how not to think.I am awake until the early hours of the morning. I can’t blame blogging entirely for this – I have always been known as a lady of the night up with pain. However, before my mind got a longer rest.

When my I-phone is ringing in my ear  I know the next day  has hit.  I then *sigh* reaching for the closest can of coca-cola to be able to manoeuvre up right and override the extreme tiredness for a short period of time.  Due to my levels of tiredness I get fed up very easily…

sleep

So, even if I have the best idea for a blog – I lack motivation  to actually blog as even the computer screen stares back at me like a fiend.  A part of this is attributed that with a chronic illness, you never know when bad patches will attack you.  This means it is also difficult to plan a content and schedule and actually STICK to it.


3. Anxiety and Negativity

 I can be a very negative person. To date, I will be honest I only have 66 followers.   I become anxious that no one will like or share my posts and that even sharing my reflections will be worthless.  I panic that the more I write the worse my academic writing for University will become and I am convinced I am going to fail there too.

The reason behind this is, blogging is very descriptive writing and University expects a much more critical standpoint for assessments.  I then wonder if I am being too ‘open’ with the public in what I am sharing and worry that it will affect future opportunities. For example – I need to pull my finger out my arse and start applying for 12 month placements for my degree.

anxiety

I frequently question, if having a blog will be a hindrance and shed light that I used drugs in my past, have clinical depression and that I am disabled. I don’t want special treatment but I know I need to disclose my disabilities on a job application form because my pain affects me on a day-to-day basis.  Whilst, this is all spinning around in my small brain,  I then worry about when I take a back seat from blogging –  if I can ever get the passion back because for other hobbies when I lost them, it was lost forever…


4. Being a Citizen of the Blogosphere

It is also no secret I struggle with Dyslexia and Dyspraxia. I find that when I read someone else’s blog to try and learn about other illnesses I don’t always understand what I am reading initially. Everything just gets lost in translation.

How do I overcome this?

I spend a lot of time on Google to understand what the illness is first and then go back to the individuals’ blog.  All of this is interesting but very time consuming.  You may be thinking – well just skip this part, but that would be a vital mistake.  Commenting on posts is essential to improve your writing skills and how you engage with other people.

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5. Gaining Traffic and Post Engagement

In October, I received just over 3,000 unique visitors. Although, I am not sure I really did receive this many as it is likely  some of these visitors were in fact me stalking myself using my friends’ phones as I was without one for a while.

I am unlucky with any electrical product! ( I  was definitely was born in the wrong century)..

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Additionally, I don’t have a strong social media following across many platforms.  I spend the most time on the one where I do have a following – Facebook, to try to gain traffic for my blog.  I am also putting ‘all my eggs in one basket’ and hoping when I finally set up a YouTube channel this will improve my traffic and engagement… as I try to figure out how to increase my Twitter and  Pinterest following.

On Facebook I post my blog posts on my wall, into a couple blogging groups and into chronic illness support groups when I have permission to do so.

 


That Sprinkle of Advice 

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Do you have a chronic illness and are thinking about becoming a blogger?

 DO IT!

Just remember don’t punish yourself for not being able to post as much as you would like to gain a following.  Fellow bloggers divulged that blogging consistently is very important, where I have fallen short a little bit as the times and days I post content really does vary. This is something I am going to work to improve as I become more experienced and I hope my readers understand that this is not always be possible.

On groups, ensure you always read the pinned posts in groups or you can find yourself getting an inbox of angry admin messages and deleted out of groups.  I find the most effective way to promote your blog on Facebook is through Facebook pages BUT be careful you will be blocked by Facebook if you are a repeat offender.

I think if you post a series on one theme, you may gain more followers. However, I don’t do this because my mind is scatty and like to think of lots of different topics at the same time!


So, guys there are the challenges I have faced blogging with a chronic illness. Next, you can expect to find 5 more general challenges I found since becoming a blogger and what I’ve learnt about myself since becoming a chronic illness blogger.


Sharing is Caring

I would love if you shared this post to raise awareness of some of the challenges a chronic illness blogger faces!


Have your Say

If you a blogger what are some challenges you face?

If you’re a chronic illness blogger do you face similar or different challenges to me?


 Like what you see? 

Join me on my journey on social media;

Facebook page

WordPress

Twitter 

Instagram

Pinterest

Thanks for staying tuned in bed with me and I hope to see you back soon.

Lots of Love,

my name

Popular Related Post

My Invisible Illness ft Tramadol

My Invisible Illness ft. Tramadol: The Ehlers Danlos Series

Invisible illnesses, Physical Illnesses

This post was inspired by Invisible Illnesses Awareness Week (15/19/17 – 21/19/17)

If you go on my Instagram, you will see accumulated photos of a happy and healthy 24 year old. Some, may even think I am luckier than most – with multiple pictures captured in different destinations.  Travelling whilst you’re young, resonates through many millennials DNA– whether it be for the sex, partying or general experience but that isn’t the case for me. There was mistakes in my genes.  I trot off to see the world on the rare occasion I am well.  Fearing one day it will be impossible.

“Instagram tells one story and now I am ready to tell you another”.

Differentiating my left from my right or retaining balance has never been easy. A simple task – walking down the street, when I make it out the house that is — turns into a game of dodgems or a dance off with a complete stranger as we try to pass one another.   Each time, piercing eyes glare towards me. Sometimes a friendly one, like I am a lost tourist. Other times it’s a look of annoyance, alongside muttering. All I can do is apologise, after all I don’t look sick.

Concealed by clothes and a face caped on of make-up and long hair, how could I?

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The truth behind the make-up”

As I stand naked I am confronted with an extremely different version of myself.  I see a painting with various shades.  Hues of red, green, black, blue and purple. All powerful colours, yet a battered body greets me, due to my lucid skin.  A body that looks of one of self-harm or domestic violence.  Panic flowing through my veins, that someone will catch a glimpse of this picture.

How do I explain this is a body of Ehlers Danlos Sydrome III (Heds)?

Even to G.P’S, which need it to be spelt as they open Google.

 

 

 

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Need explanations of Ehlers Danlos Sydrome? Click here


Before my diagnosis in 2016, I worked as a Waitress actively using my muscles. However, falling up and down the stairs and dropping to the concrete floor like a ton of bricks, was my signature dish. I spent my tips on creams and ointments, believing the burns, scabs and bruises could be easily erased- I was wrong.

“Denial –the deadliest form of depression”

Imagine, making cup of tea is like running a marathon. Or any movements of your arms or legs makes clicking or crunching noises as your joints dislocate.  Feeling like  like needles are travelling through your body, as fast as lightning.  These are my day-to-day realities. An extreme case of pins and needles, I once convinced myself. Never connecting those feelings to the coloured landscape that covered me.  To other people, including G.P’S I was just a hypochondriac, tired, accident prone and clumsy.

I purchased Tramadol in bulk online and took it a few times a day. It was catch 22.  when I took it I would be dazed – half with it. However, if I didn’t take it the pain would hit me harder within an hour and my awful mood would return…

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“Unsure, if I could survive a quarter of a century, something had to change”.

At the righteous age of 23, my head became too heavy for my neck and I was continuously dehydrated. Unable to work anymore, I couldn’t let some marriages last longer than my life.  I convinced my family to pay for a private appointment with a leading rheumatologist, in basic terms a muscle doctor. I promised to stop whinging, if nothing came of it.  At £300 per hour – it’s not hard to see why.

The appointment arrived one week later. Within twenty minutes I became the Cheshire cat out of Alice and Wonderland. A smile of relief.  FINALLY I had a label, the answer I was searching for. Yet, that label led quickly to change in character. I saw red. Bitterness invaded my mind as I learnt there is no cure for EDS. Not to mention, I had been told, there may be more underlined medical problems associated with it like POTS.


    “The Ehlers Danlos syndromes evil natures

I don’t take Tramadol anymore, because I want a clearer mind, which leads me onto my next point. With EDS, it is never a question of are you in pain, it’s a question of how much.  Yet, the diagnoses are imperative for mine and other patients’ sanity. EDS is like God – some people can’t  believe, what they can’t see.

The thing is – with an invisible illness you have the choice who you tell about the disability.  Some patients view this as distorted blessing, a chance to be normal again. I know I do. From time to time I remain quiet about EDS to prevent being excluded from an activity.  Unfortunately, this usually causes more damage.  As I lay my cripple body flat, speculating when I will walk again; I find myself extending my blacklist instead of the bucket list.


                                              Could you have Ehlers Danlos Sydrome?

If you are double-jointed, have chronic joint pain and suffering with chronic fatigue you may have Ehlers Danlos syndrome. Don’t suffer in silence and head down to your G.P and reach out to support networks.

Coming soon

 An EDS series of Vlogs and blogs welcoming you into Morgan’s world and all things Heds.


Sharing is Caring

I would love if you shared this post to give people an insight of what it can be like to live with Heds.

Have your Say

What do you think about invisible illnesses and how they are perceived?


Join me on my journey on social media.. 

Facebook page

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Twitter 

Instagram

Pinterest 

Thanks for reading,

Lots of love,

my nameRelated post

About me

 

 

A Day in the Life of Someone with Epilepsy

Guest Posts, Peeping through the Keyhole, Physical Illnesses

Hello, everyone.

Today’s post is written by Ariel (formatted  and edited by moi), a courageous American woman living with Epilepsy. I would like to thank Ariel at Different Frame of Mind  for collaborating with Brains & Bodies to share an insight into what it is like for someone to live with this condition.

Ariel and I believe it is important to increase awareness of illnesses to try and improve how they are understood and perceived.

For those of you who don’t know much about Epilepsy, in simple terms it is a serious brain disorder which causes seizures. Just in the U.S, on estimate 2.5- 3 million people are diagnosed with Epilepsy (Health line, 2014). The type of seizures and frequency vary from person to person but may be attributed by similar factors such as; flashing lights, tiredness, not taking medication and stress. Some patients, do not know when seizures will arrive, which has a significant impact on their lives.

Now, that time has come to leave you in Ariel’s safe hands.

Over and Out.
my name


A Day in the Life of Someone with Epilepsy

One day I woke up and my mother was staring at me like she had never done before. I mean one of those stares that have you worried from the start, I was in the 3rd grade mind you. At that age you understand what is going on, but not to the full extent when you should. I repeatedly kept asking my mother what was wrong while she was crying.

She then told me that she believed I had a seizure in the idle of the night, as I was shaking uncontrollably for a few minutes. Which lead her to calling and scheduling me an appointment to see the doctor, more specifically a neurologist. When I received the news that this had happened to me, I simply accepted it and went on wondering what was happening to me. After doing an EEG, the doctors informed my parents and me that I had a condition called grand mal seizures, absence seizures and later on I would discover that I also had a sun sensitivity condition.

       Try telling all of that to a 3rd grader and see what they say.

brain

The doctors put me on some medication, but they said it was the dosage they would give to a 2 month old baby. I began to ponder why I was taking it in the first place. I did not have my next seizure until I was in the 5th grade, this was when I felt a shift in my entire life. I was typing up a report for school, when the computer caused me to have a seizure. I cannot tell you what happened. I can only tell you what others said happened around me. I woke up in the hospital with a cut on my throat, a knot on my head and a hurt tongue.

I was devastated and felt out of place, it had finally dawned on me that I was no longer a normal kid. When I returned to school, all of the other students judged me and made fun of me. I thought, “Great I have to spend the rest of my time at this school known as seizure girl.” Even the girl I fell on was afraid of me, from that point on I felt not normal, misunderstood and not accepted by society.

My entire life revolved around making sure I got enough sleep, to making sure I wore sunglasses or a hat etc. I had another seizure in the 7th grade and did not have another until I was 20. I spent most of my high school years not telling people about my seizures unless my mom made me hand my teachers a handout on what to do if I had one. I was completely devastated doing that, but I knew it had to be done for my protection. I tried out for track my freshman year, but ran into a dumpster and about broke my arm due to my sun sensitivity.

Sun sensitivity causes me to wave my hand back and forth in front of my eyes, looking almost as if I am brushing my hair back. I have zero control of my body when this happens, which means I could walk in front of a car without knowing or not see something and trip. I have had a few seizures caused by this. Which brings me back to my seizure when I was 20. I had just embarked on my first vacation with a friend but without any parental supervision. We finally arrived in Myrtle Beach, South Carolina and checked into the hotel. I knew I should have taken a nap since I barely got any sleep, but I was way too excited to see the ocean.

The bright sun shines on a blue sky background.

About 20 minutes into the vacation, I fell over on the beach and had a seizure due to my sun sensitivity condition. I woke up in the hospital, without anyone around that knew about my condition. My friend was supportive, but you could tell the friendship between us had changed. I wanted so badly to give up the vacation and just go home.

My mother talked me out of it and I ended up having a wonderful time. Although I do not have seizures as much as many people do, I still live with seizures. I still feel out of place and wish that I was normal. I love sitting out in the sun, but I have to find ways to shield my eyes from the sun. Instead of letting it get me down day in and day out, I find ways to learn to cope with it. I used to let seizures stop me from doing things that I wanted to do.

Now that I am older, I understand my condition better and find ways to control, deal and cope better with it compared to when I was younger. A medical condition only defines you if you let it. I still continue to work full-time and live my life to the fullest. My biggest piece of advice to anyone recently or in the past diagnosed with epilepsy is that there are others out there that understand it. I felt so alone, but you are never alone. Also do not give up on life or let the diagnosis define you, there are always ways to cope with this.


  About the Author

ariel

My name is Ariel and I am the creator of  Different Frame of Mind  blog.  My blog focuses on travels with little funds, medical and psychological disorders. I was born in Kansas, but currently reside in North Carolina. I am married and have two wonderful puppies.

I am a bucket list traveller and have plenty to still check off. I have been on a cruise, travelled to 34 different states, swam with the dolphins and so much more since 2010.

Join me on my journey on one of the social media links below.

Pinterest

Twitter

Facebook

Instagram

Xoxo, Ariel


Sharing is Caring

We would love if you shared this post to raise awareness of what it can be like to live with Epilepsy.


Resources

Have you or know someone who has been recently diagnosed with Epilepsy?

 Epilepsy Action  helps Epilepsy suffers learn how to manage their condition better. The accredited course costs £40 but can be done in an environment whereby you feel comfortable and lasts 8 weeks.  I (Morgan) think this is great to give you or a loved one confidence in managing the illness.

Epilepsy does not just affect the patient.  Epilepsy helpline can provide the patient or carer with emotional support if you are having a bad day.

Telephone number (U.K) 01494 601 400*

                                             * Check the website for opening times.

E-mail Helpline@epilepsysociety.org.uk


References 

Epilepsy Action Learning. 2017. Epilepsy and you | Epilepsy Action Learning. [ONLINE] Available at: https://learn.epilepsy.org.uk/epilepsy-and-you-june/?gclid=EAIaIQobChMI5batouLh1gIVwZPtCh2XKQfCEAAYAiAAEgJSr_D_BwE. [Accessed 08 October 2017].

*Epilepsy Society. 2017. Epilepsy helpline | Epilepsy Society. [ONLINE] Available at: https://www.epilepsysociety.org.uk/epilepsy-helpline#.Wdp_IFtSzIU. [Accessed 08 October 2017

Healthline. 2014. Epilepsy: Statistics, Facts and You. [ONLINE] Available at: https://www.healthline.com/health/epilepsy/facts-statistics-infographic. [Accessed 08 October 2017].

The *10 Guys You’ll Find on POF

Dating, Uncategorized, Well-being

pof

Online datingin 2017is like playing cards – you’ll never know what you’ll get.Yet, there are many reasons why you might turn to it. You may be disabledmaking meeting people more difficult. Or be a busybee. It’s fast for a hook up, you’ve been on the SESH and didn’t get anyattention or you’re a hopelessromantic thinkingyou’ll actually find someone. I am sorryto break it to you but this is highly unlikely

You may be wondering why on earth am I on POF?

Well, perhapsyou’re like me, you’re just interested to see what’s floatingaround  the marketwhilst needinga little ego boost. I’ve been a member of POF onand off since January and I’ve met one person in reallife. Although, I am not sure he counts, as he was a friend of a friend. If you’re curious he turnedout to be number #7… and like a typical girl, i still have a soft spot for him (at the back of my mind, of course)

I won’t lieI have heard success storieswith Tinder but POF is an entirely differentball game. Anyone can message you, so connectingwith people is fasterand in turn I’ve found much weirder. This post will enlighten you on the *10types of guys to avoidon it.


So let’s, begin…The *10 Guys you’ll Find on POF

1. The D*ck Pic Guy

No matter what dating app you use there will always be the d*ckpic guy. It is either the first message from him in your inboxor you tellhim you don’twant one and he sends it anyway.He is one horny rabbit… and an uglier version of the f*ckboy (#7). If you looking for no strings attached and you’re not too worried about the stateof his face… By all means crack on but it’s a NOfrom me


2. The Serial Dating App User

This guy will write a genericlooooong message and spam you like a recruitment consultant.

“Hey how are you darling, where you from? You have beautiful ______ (inserts a part of the body). How are you finding Tinder?”

Yeah you heard me, Tinder.

He will oftenget confused with which dating app he is usingto message you and then pretend he hasn’t. He is either shockingly badat pulling, is desperateto be with someone OR is using as many channels as possiblefor sex.

dating app


3. Mr Stalker

This typeof guy mayor may not live in your local area but claims he has met youbefore in a place you’ve neverbeen or not at the timethey’re stating. You will notice a guy is a bit stalkerish if he sendsyou messagesevery minute of every day and gets moody when you don’t reply. Another warning sign is when you don’t reply at all and he persistently sends ‘three hey messages’ in a row.

All I can say is be cautiousgiving your numberto this type of guy AND social media accounts. Before you know it – You’ll be receiving Snapchats, Facebook and Twitter messageswhilst he’s simultaneously trying to textand callyou. He will leave you voicemails asking why you brokeup when you wasn’t even together.

Unfortunately, when you blockhe’s number it doesn’t endthere. The stalker will wantto knowwhy you’re not interested and search for your place of work and randomlyspend time in it like it’s his second home to watchyou. This happenedto me on a couple of occasions.

Creeeepy ey.

If this does happen DO NOT leave work alone. Be politeof courseit’s your jobbut try to keepthe conversationto a minimumto prevent his infatuation heightening.


4. The Proposer

The proposer is a bit more complicated than the other 9 types of guys.Why?
Well he has sub-categories. You may receive a message proposing a range of things from a man such as; offering to shower you with giftsand money, paying you in exchange for nudes, wanting you to satisfyhis strange fetishesor… he desires a threesome.suugar daddy

If you’re liberal and want to make some money… you might like the thoughtof men buying you things or sending nudes for money.

Nonetheless, just remember once something is publishedon the Internetit can nevertruly be deleted. Also, if the buyerguy demands to meet you and not in a public place, virtually run that mile.

              It is better to be safe than sorry.


5. The Book Writer

This guy has analysed your profilein depth. He’s never met you but is already falling weakat the knees. He’s taken every single word from your profile and made an elaborate essayof why you would be perfectfor each other. As, you read the messageyou can’t help but eye roll CRINGE

Whilst wonderingif he has mental health problems, if he’s pining for a partner or just a bit odd as you move on to your nextmessage.


6. The Cheater

He is one shady mother f*cker.He spendsa lot of timemessaging you to keep up the single pretence but really is lookingfor ‘the other woman’. More often than not he will have his six packon displaywithout a photo of his face. This is so he can say it’s someone elseif he gets caught out.

If he’s in a long-term relationshipyou may find a picture of his face because he believes that he won’tget caught. Facebook ruinsthat. If he lives near you on in your localarea, chances are a friend of a friend will know him and out him.

His biowill say something like ‘looking for some fun’ whilst he would of entered ‘not looking for a serious relationship’ when he signed up. Try and stayclear of this type of guy. You may end up riddles with STDS, pregnant or heartbroken.

Or a triple hat-trick.

cheat


7. The F*ck Boy

If you’re not down with the lingo… The f*ckboyis someone who wants to get their d*ck wet ALOTand doesn’t carewho they screw overin the process. He is on heatlike a Duracell rabbit. He is usually very attractiveand give youthe impression he is into you when in realitythey are or planningto message multiple girls at once. He would of put ‘looking for a relationship’ on their profile when their not to make out there a nice guy.

Manyturn out to be this type of guy. You can guarantee he is looking for a ‘gap-filler’ girl and suggests ‘Netflix and chill’ or he will say ‘I’ll cook you dinner round mine’ on a Sunday evening. Once, you get involvedwith him he will say he has feelingsfor you, and then retract this saying he told you the situation from the off go. Then, when it suits he will state he has feelingsfor you again.

Simply, a mind f*ck!

duracell rabbit

He will get jealous if you speak to other guys but won’t want youto spend timewith his friends.By preventingthis, his friends can’t accidentally drop him in it that he is after all the m*nge in the world.

If your friends are also on POF he has likely sent them a cheekymessage too so it’s easierto identify the f*ckboy. If not then look out for texts in the early hours of the morning after his night like ‘You out? Want to come over for a drink?’ If you’ve just got out of a long-term relationship and you want fun go for it. Just always use protectionas you don’t know where he’s been. After all, women have needstoo.


8. Ex Garbage

As so many people are dating online don’t be surprisedif you come across your ex-boyfriendon POF. If you’re stillinto him *sigh* I know this can be tough but he will think you’re over it if he finds you on there too. Stay strong. Whatever you do, don’t message him… The past is the past for a reason!


9. The Chancer

Welcome to the ‘I favourite your account’ guy and sending you sparks.  Sparks are images from your profile that he likes and uses to starta picture conversation. That’s it really, you won’t hear from him again or at least not for a week or two, as he is probably favouriting everyone, tryinghis luck.


10. The Foreigner

He is on vacation and has locationsettings turned on. He is exploringoptions, claiming he wants to make friendsin the area and that he will moveto your countryone day. Really he is a temporary versionof the f*ckboy. He has photos with touristic places, and a solid tan (shouting foreign).

Oioi he is HOT. You thinkall is going well.

He speaks your languagewhat are the chances?

In truth, he WRITES it as good as Google translate. Once, you ask for a voice notethey make excusesand the conversations dies unlessyou can speaktheir mother tongue
You usually can find out their first dialect from their bio.

tourist


There we have it boys and girls. I hope you have found my FAILEDexperience of POF interesting.

Are you on a dating app?If, sowhy not comment below?

I would love to hear what type of guys you’ve met virtually or in person on it!


Sharing is Caring

I would love if you shared this post to let others know who they might come across before they sign upto POF.


Like what you see?

         Follow me on…

Thanks for Reading,

Lots of Love.

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The Blogger Recognition Award 2017

Uncategorized

Hi everybody,

                                   Welcome back.

Brains & Bodies has received its third nomination for a blogging award this year.  In my first two weeks of blogging I was surprised to have received two nominations for ‘The Liebster Award 2017’. It seems that the saying third time lucky is in full swing and this time I am proud to announce I was nominated for ‘The Blogger Recognition Award 2017″ by Preeti at Scenario of Life.  

Scenario of Life is a lifestyle blog that lets you into everything in Preeti’s world.  She is a credible blogger and so far has received nominations for two blogging awards. If you are interested in health and different aspects of life you should check her blog out.


blogger-recognition-award


I launched Brains & Bodies about a month ago and since then I have been astonished by its response. Of course, I am no Z list celebrity, but it’s a great feeling to know people enjoy what you are writing and recognize the importance of health and well-being topics.   I want to thank everyone who has read my posts to date across different oceans.

 Blogging is one of the best things I have ever done for myself mentally and an an amazing opportunity arose this week. I have been asked to be a guest writer for one semester at Cherwell Blogs.

Cherwell Blogs is a blog from the only independent student newspaper at The University of Oxford.  I can’t actually believe I am saying that – I am not even a student there.  I attend Oxford Brookes so theoretically I am still in the Early Learning Centre being asked to play with the top dogs. Nonetheless, being a guest writer will be a great addition to the CV – and it also gave me a compliment off my mother – which is a rare commodity.

However, I can’t lie I am not your usual blogger. One of my main illnesses – Ehlers Danlos Syndrome still holds me back somewhat as I cannot write every week due to the pain I endure.  I accepted the position on the condition I will be writing bi-weekly for them about chronic illnesses related posts– watch this space!

cherwell


BACK TO THE BLOGGER RECOGNITION AWARD AND ALL THAT JAZZ

Similar to the Liebster Award, The Blogger Recognition Award is given to bloggers by bloggers. Its purpose is to motivate further writing and acknowledge the effort that is involved in generating posts.  The award is great for bloggers to review and reward each other’s work to create a supportive blogging community.

Once, nominated… If you wish to accept the nomination there are a few rules to be followed which are;

  • Produce a post about the award
  • Thank the blogger who nominated you and provide a link to their blog
  • Write a brief story about how your blog began
  • Provide two pieces of advice to newbie bloggers
  • Select 15 blogs to nominate
  • Comment on each nominee’s blog and provide a link to the post you made about the award

HOW MY BLOG STARTED

I first was required to create a blog for a University module in the last academic year about Business topics. I didn’t actually receive any likes, comments or shares but I found it was a good way to map out my thoughts more clearly.  I didn’t really think about blogging that much more until I became so sick I couldn’t leave bed and I didn’t know how to explain my health problems to others… or whether I should bother anymore.  If I tried, I wasn’t able to vocalize it very well. I mean in my mind I was but everyone else would ask me to repeat what I said again which led to frustration and feeling alone.

 I own more than one invisible illness – EDS and Depression.  On the odd day I left the house I found I was discriminated against on public transport. I was often told to move to let young children sit down on long journeys.

I explained why I needed to sit down but as parents got rowdy I moved yet my nobly knees didn’t thank me for it. I knew I didn’t look sick but I thought once I explained why I needed to sit down people wouldn’t question it. I was wrong. These things combined led a passion to grow in me for raising awareness about disabilities and well-being.

passion


TWO PIECES OF ADVICE FOR NEWBIES

  1. Discover your Writing Style 

When you’re a newbie, you will quickly realize you need to find your own voice to stand out in a crowded community.  EXPERIMENT with your writing and you will find out what works and what doesn’t.  There are many ways to discover your writing style. Play around with words because your posts will need catchy titles to draw people in.  Writing in a conversational tone can also help the reader feel connected to you.  I suggest you write questions at the end of your posts to engage readers with the contents and don’t worry if you make mistakes.  They aren’t really mistakes if you learn from them.

 I’ll let you into a secret…

Mistakes are normal if you seek to be a fully pledged citizen of the blogosphere.  If you are really stuck then read other blogs. There is no harm in copying the structure of a post as long as you ensure the content IS different.

  1. Raid your Inspiration 

What I mean by raid your inspiration, is when inspiration strikes, write!  You can always come back to your writing to add more or refine existing content and have several drafts.  Proof reading is equally important as writing the original post.  It is better to post content you are proud of than writing for the sake of writing because your worried other bloggers are posting every single day and will gain more traffic.

 inspiration

An Extra Tip –Free of charge, of course. 

  1. Join a blogging network

Blogging is not an easy ride.  Writing is only one half of the process, whilst the other is promotion. My third piece of advice is to join a blogging network. Blogging networks can be hit and miss if they are generic so search for one in your niche.  By finding a network you can increase traffic and engagement and gain advice from more experienced bloggers.  You can look for a variety of blogging networks on Google but many tend to be on Facebook.


MY NOMINATIONS

       Health 

     Lifestyle and Travel

     Parenting

  • Danny at Dadoo  
  • Mark at Thoughts of a First Time Dad

    Congratulations to all my nominees, you deserve it. I hope you have fun if you choose to take part and I look forward to reading your posts.  I would like to thank Preeti again for nominating Brains & Bodies and appreciating my hard work.

    READERS… GET INVOLVED

    1. What do you think about the award?
    2. Do you have any advice new bloggers?

        SHARING IS CARING 

     I would love if you shared this post to support mine and my nominees’ blogs.

          LIKE WHAT YOU SEE?

                                            Follow me for updates on …

       Thanks for reading,

    Peace out. 

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