#EDSBlogChallenge (Part 2)

Chronic Illnesses, Invisible illnesses, Uncategorized

Hi Guys,

If you are just tuning in and missed my initial post or want to get involved in the challenge you can still find the questions on my first  #EDSBlogChallenge post.


  1. What are your top 5 coping tips?
  • Stay hydrated with water
  • Eat small but frequent meals
  • Take naps or rest when possible
  • Be honest with other people about your limits
  • Use natural remedies like lavender and mint to help with physical pain

  1. What are your top 5 goals you want to accomplish despite your chronic illness(es)?
  • Complete my placement year in Marketing
  • Finish my degree with a 2:1 minimum
  • Travel to two countries in the next two years
  • Keep blogging as a hobby
  • Spend more time with my friends and boyfriend making special memories

  1. How do you stay motivated in your daily life?
  • I try to keep my mind occupied on University work
  • Reading books when I can focus
  • Writing whilst watching films or listening to music
  • Giving my pet rabbit and my boyfriend’s dog cuddles
  • Talking to friends and using Facebook support groups for Ehlers-Danlos
  • Asking support from people when I am having bad flares

  1. What do you want people to know the most about your life with EDS?
  • It isn’t just a joint problem that makes me look young, it is a joint problem that affects my daily life in most things I do.
  • The chronic fatigue part of it is insane and pain in one area may be different and a different severity to another part another day.

  1. When did you first start thing that the dislocations/subluxation extreme flexibility etc. could be related to a real problem?
  • Around 22-23 years old when I stopped working as a Waitress I noticed the pain heightened considerably and I became very weak.

  1. Did your related diagnoses come before or after your EDS diagnosis?
  • Photosensitivity, IBS, nut, gluten and lactose allergies, oral food syndrome and a vitamin D insufficiency came before and chronic bladder syndrome, an increase in mast cells came after.
  • My pots test came back inconclusive and I am waiting to be tested for MCAD, Chrones and celiac disease

  1. What is your biggest pet peeve about trying to explain EDS?
  • Many people think I am lucky when I explain that I am hyper-mobile and switch off when I try to explain it is much more than that.

  1. How has being sick impacted your relationships?
  • Some relationships have become stronger and some weaker. I am shyer to make new friends and talk to new people as I am worried I won’t be able to sustain new friendships.
  • I have found a boyfriend who accepts me for who I am and understands I can’t do everything and I have become closer with my family.

  1. What was your initial thoughts about being diagnosed?
  • I was such a mix bag of emotions!
  • I was happy to find out I had EDS but I thought that was the end of it. I realised it was just the start of a long journey to find out what else was lurking behind the wood works having very big digestive and bladder problems.
  • However, I am happy the doctors are more willing to find out what is wrong and try to make me feel better

  1. What healthy habits have you adopted since being diagnosed?
  • To be honest this is still a massive work in progress. I still smoke and drink alcohol but I have cut down considerably (more on the alcohol part).
  • Any form of exercise hurts and tires me out massively but I am going to try and start a full-time job for a placement in July
  • I am eating healthier eating more fruit and vegetables and making sure get lots of rest.

  1. How do you feel about your current treatment plan?
  • My current treatment plan isn’t very good as I am back taking Tramadol and a few other tablets and strong vitamins.
  • I was meant to do the 3 week intensive therapy course at RNOH but I currently am struggling to stay up 9-5 to do this.
  • I am also waiting for planning instillations and I am having an Endoscopy soon. I feel once I see a mast cell specialist the EDS will get better if I can block out some flares.

  1. What do you think is the most misunderstood aspect of EDS?
  • That it is even an illness(to those who don’t know what EDS initially is)
  • for those who do I find they think all the types are the same and even people with the same types have the same issues

  1. What are your top things to pass time when you’re stuck in bed?
  • Eat and sleep!
  • Watch Netflix
  • Text or speak to friends on the phone
  • Blog or do Uni work
  • Smother (I mean cuddle) my boyfriend

  1. What is your favourite motivational quote and why?
  • It does not matter how slowly you go as long as you don’t not stop.
  • I love this quote because it shows that resistance is key and no matter how long something takes if your determined you will get there in the end

 Sharing is Caring

Please help me in my quest of raising awareness of EDS by sharing this post


Have your Say 

Do you have EDS or know anyone with it with similar or different experiences – then why not comment below?


Like what you see?

Join me on my journey

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Thanks for Reading

Lots of Love,

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#EDSAwarenessMonth Blog Challenge

Chronic Illnesses, Invisible illnesses

 

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Hey Guys,

As the sun is shining it is clear summer has started … but for those of you who don’t know  May is also Ehlers-Danlos Syndrome Awareness Month.  As University is winding down for the year I am hoping to get back in the swing of blogging.

I found the #EDSAwarenessMonth Blog Challenge by Kali at  This Spoonie Speaks. I have decided to participate but please bare with me as I catch up… To begin I will answer the first six questions but if any of you fellow Zebras want to participate in the challenge, I have listed the questions at the end of this post.

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1.Introduce yourself and explain what type of EDS you have.

I am Morgan, quarter of a century old in my second year studying BA (Hons) Business and Management at Oxford Brookes.  From my knowledge there are 13 types of recognised EDS, but I have the most common type which is type III known as hEDS. I was diagnosed with EDS at 23 years old by a rheumatologist but I had showed signs from an early age.

One of reasons why I was not diagnosed earlier is because hEDS does not have a specific blood tests and symptoms can vary between patients.  However, there are more stringent guidelines for diagnosing EDS now, known as the Beighton Score.

You don’t need to wait to see a doctor to see if you can do the 9 tasks you will be asked to perform when seeking an official diagnosis.  I don’t remember my Beighton score but I remember it being relatively high with more flexibility in my upper body ( you don’t need to be able to pass all 9). My lower body has become more flexible over the last two years.However, a common misconception is your only symptom is hEds is hyper-mobility.  My other main symptoms of EDS are joint pain,  bladder and bowl pain, chronic fatigue, bruising, problems absorbing vitamins and severe photo sensitivity.


2. What other illnesses do you have that are related to your EDS?

It is common for EDS to coexist with other conditions, however this is not always the case.  Unfortunately, for me this is not clear cut.

I suffer with multiple allergies and gastroenterology issues which are still under investigation. I was born lactose intolerant and then developed allergies to gluten, nuts, tree pollen, grass pollen cats and nickel being sensitive to numerous other products and being diagnosed with oral food syndrome and IBS.

I am suspected to have Crones or Celiac Disease but have not been able to intake gluten for 6 weeks to be tested. I have also been waiting over a year to see a mast cell specialist and bladder instillation’s due to chronic bladder syndrome.  When I was younger I suffered a lot with urine and bacteria infections associated with eating certain foods. My POTS test came back inconclusive but I I an renown for  low blood pressure.


3.How long did it take you to get your diagnosis? How many doctors did you see?

After my brother suspected I had EDS it took me about a year to get an official diagnosis. However, my parents paid for me to go privately as my GP was convinced it was all in my head despite my brothers diagnosis and similar symptoms for years. Initially I saw a Rheumatologist but due to  the time of my diagnosis and the changes in EDS regulation I saw another one on the NHS to confirm I did  have EDS.


4. What do you want newly diagnosed EDS-ers to know?

Its okay to feel relieved when you receive a diagnosis but also overwhelmed.  The difference is know you have the resources and language to help you start recovery when you are ready. However, do not expect a diagnosis to be a quick fix, the NHS has long waiting lists and you may find a EDS diagnosis is the start of your journey to rule out other conditions.

Although it may not feel like it a label can help you out in so many ways. It can make your GP more understanding, support you apply for mitigating circumstances in your studies and your employer is likely to let you take more short-breaks.  I would say don’t try and figure everything about EDS in one day because this can leave you panicked or frustrated. You can find a local support group, or if you have a busy life or feel unwell social media has many virtual ones online. I find because everyone experience of EDS is not always the same I prefer to listen to specialists, but I know this does not work for everyone

It is all about finding out what works for you!


5. How have you adapted to your diagnosis?

I am still coming to terms with my diagnosis because mental health plays a big part in a physical illness and stress makes joint pain worse for me.  The biggest change is now knowing I cannot keep up with everyone else and going out one day will make me tired for two.  My life is having really productive days and long periods of nothing.  I am trying to get into a routine to do a 3 week inpatient physical therapy rehabilitation course at RNOH I have started taking Tramadol, Codiene and co-codamol when the pain becomes unbearable again.I also consume loads fizzy drinks for bursts of energy – Although, I don’t recommend this.

Hot water is my best friend and I find I always have a hot water bottle to hand and take multiple showers a day because  heat helps loads.   I am soon to be go back to full-time work properly for the first time in years but I will keep you posted on this – As I am still spending loads of time in bed.


6. How has EDS changed your life for the better? 

I am not going to lie to you and say EDS has changed my life for the better overall but it does have some positives.

Firstly, it helped me become an EDS advocate and find this hobby of blogging, sharing my experiences to help others.  Secondly, EDS has brought my family and I closer together because now they understand I am not being a drama queen and I am actually in pain.  Although I have lost friends by staying inside I have found by being in pain all the time I now found I appreciate the special memories I make with my friends and boyfriend.


Sharing is Caring 

Please help me in my quest of raising awareness of EDS by sharing this post.


Have your Say 

Do you have EDS or know anyone with it with similar or different experiences – then why not comment below? 


Like what you see? 

Join me on my journey;

Facebook page

WordPress

Twitter 

Instagram

Pinterest


 #EDSAwarenessMonth Blog Challenge Questions 

  1. Introduce yourself and explain what type of EDS you have.
  2. What other illnesses do you have that are related to your EDS?
  3. How long did it take you to get your diagnosis? How many doctors did you see?
  4. What do you want newly diagnosed EDS-ers to know?
  5. How have you adapted to your diagnosis?
  6. How has EDS changed your life for the better?
  7. What are your top 5 coping tips?
  8. What are your top 5 goals that you want to accomplish despite your chronic illness(es)?
  9. How do you stay motivated in daily life?
  10. What do you want people to know the most about your life with EDS?
  11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?
  12. Did your related diagnoses come before or after your EDS diagnosis?
  13. What’s your biggest pet peeve about trying to explain EDS?
  14. Has being sick impacted your relationships?
  15. What were your initial thoughts about being diagnosed?
  16. What healthy habits have you adopted since getting diagnosed?
  17. How do you feel about your current treatment plan?
  18. What do you think is the most misunderstood aspect of EDS?
  19. What are your top things to pass time when you’re stuck in bed?
  20. What is your favorite motivational quote and why?
  21. What is your favorite piece of medical equipment that you own?
  22. What things have you learned from being chronically ill?
  23. What was your worst medical setback? How did you overcome it?
  24. What was your worst encounter with a doctor?
  25. What is the worst unwanted advice you’ve ever gotten?
  26. Have you found books that have helped you cope with being chronically ill?
  27. What would your coping advice be to friends or family of someone who’s chronically ill?
  28. What is the strangest question you’ve ever been asked about EDS?
  29. Do you think changes to your diet helped or contributed to your symptoms or the severity of them?
  30. What has been your biggest outlet to help deal with being sick?
  31. What are your favorite memories from EDS Awareness Month?

 

 

 

The Spoon Theory Explained

Invisble Illnesses, Physical Illnesses, Resources

Hi Guys,

I was contacted by Victoria at Burning Nights, who has produced a valuable infographic about the Spoon theory.

Victoria is the founder of Burning Nights is a small U.K charity dedicates to helping those battling  Complex Regional Pain Syndrome (CRPS).  CPRS is a chronic condition where someone usually experience chronic pain in one limb.  We would love if you shared this post to raise awareness of the condition and the work that the charity does.

You may also find my post 5 Ways to have a Productive Day with a Chronic Illness useful to manage your time  inspired by the Spoon theory)

Lots of Love,

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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.


Like what you see?

Join me on social media;

Facebook page

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Instagram

Pinterest

Over and out,

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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

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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.

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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…

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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.


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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;

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

Lots of Love,

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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.

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


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Thanks for reading,

Lots of love,

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About me

 

 

The chronically ill student’s quick-guide to success

Uni

It is hard enough for University students to balance their coursework and exams with their social life. So, when a chronic illness is thrown into a mix, it definitely puts a spanner in the works.  Surviving student life with a long-lasting illness can appear daunting, impossible.

Trust me, I know. I had a mental break down three weeks in my first year and nearly dropped out.  The tips I am going to give you, are the techniques that enabled me to find my feet ; study with more ease and achieve high grades.


1.  Apply for DSA

If you have a chronic illness, you should qualify for Disability Student Allowance (DSA).  You apply for this through Student Finance (SF). You will then be offered a ‘Needs Assessment’ . This assessment determines what you are entitled to, based on your individual circumstances.

If you take anything from this post, it is really worth taking the time to make an application because your disability will be on record – even if you switch unis or defer. Module leaders are also made aware of your specific needs and you should get extra writing in exams and coursework extensions. Other examples I received were; printing costs ,  individual £1 taxi journeys costing  to and from campuses and Dragon software.  The software works by you speaking into a microphone and it types up what you say.


2. Order groceries online

Getting your groceries delivered may sound like a trivial thing but if you have a physical illness, it is something you MUST do. Not only will the delivery man become your new best friend, you won’t break your back in the process of buying food. food

It is easy to want to buy everything online but don’t spend money for the sake of it unless you are mintedIf not – like the majority of the student population, it is wise to set yourself a limit so you don’t become the size of a hippo and can go out.

Most supermarkets add basket charges which cost between £3-£6 each time.  If you want to do lots of little shops, TESCO delivery saver gives you the choice to pay for unlimited deliveries as long as you reach the minimum spend (£40).


3.  Select a disabled bedroom

Most Universities, allocate disabled spacious rooms in halls with larger beds on the ground floor. You will need to apply for the room during the booking of the accommodation and disclose evidence of your disability. I recommend doing this otherwise you might find it difficult to get to sleep with pain.


4. Cook meals in bulk

When your illness flares up, I know it can be difficult to do anything. When mine does I don’t want to get out of bed unless it’s to eat – I am a proper foodie. Cooking meals in bulk ensures that you always have something to eat, should you feel hungry – which is important for recovery.   Quick and easy nutritional meals I recommend that are fresh are; stir fries, steak, pasta, jacket potato with beans, sandwiches and chicken with salads.


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5. Be upfront & request help

Being open can be a difficult thing; for many in a new environment with strangers.  You may worry more that people won’t accept you because your different. Don’t worry, just be honest about your illness. When I wasn’t honest about mine I lost a lot of friends because they thought I was boring when I couldn’t go out.

Don’t live a lie and just try to keep up with the pace of everyone else. The chances are, you won’t be able to for long and burn out. Also, talk to your lecturers and  about your condition.  Discussing your illness can make them more understanding than it written down on a piece of paper.


6. Visit wellbeing

Every Uni, has a wellbeing department.  Go VISIT it.  You will be designated a disability advisor, who handle matters on your behalf and can help you with queries. My advisor helped me talk through my options if I was to stay or drop out of Uni and drafted my disability memo to staff.  You may find that you are entitled to extra support that is run by your specific institution too. For example, stress-relief and anxiety workshops.


7. Buy an audio recorder

When you do roll up to those 9am lectures, with a potential hangover and chronic audio recorderillness; chances are you won’t be playing much attention.

If your Uni does not record lectures, buy an audio recorder – they are only about £20 from Curries or Argos.  This device was literally my savour throughout first year and helped me remember content. However, make sure you sit near the front to get clear audio. I don’t think I would have achieved my high grades without this gem.


8. Take your laptop to lectures

Some lectures, speak very fast.  So, I suggest you take a laptop so you can open up the slides and go back and forth at your pace to keep up.


9. Have a structure

Try to plan your days as best as you can. So, you can relax  at societies and find time to do your coursework.  This can be difficult when your ill and one day merges into another but the secret is you can have a loose routine as long as you stay organised. By this I mean completing coursework progressively and putting your notes in a folder.


10. Take the free support available

I know, it can be hard to accept help, because of pride – you don’t want your illness to define you.  I was reluctant at first to take help but I was really struggling to plan my workload.  You are likely to get a learning support assistant through DSA for one hour per week in a study room.

The assistants are not subject specific but are still useful. During these sessions the tutor taught me how to structure essays for exam, check my progress and helped me plan. Be aware though – if you miss 2 consecutively without 24 hours’ notice your Uni reserves the right to stop these sessions for the entire semester.



 So, there we have it guys. My guide for the chronic ill student’s success.

I hope you found it useful.

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*This post had 50 shares but when I updated my domain it reset and all old shared links became invalid.


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Do you have any top tips that helped you studying at Uni? If so – why not share them below?


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PoTs – The Invisible Demon.

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, POTS

PoTs Explained and my Symptoms

Postural Orthostatic Tachycardia Syndrome also known as Dysautonomia (PoTs). That’s one a hell of mouthful, right? A condition I might have, that I can’t even pronounce properly. picture for blog

Before I start, I am not going to pretend I am a medical professional or a scientist. I do not have extensive knowledge on the Autonomic Nervous System or PoTs. This blog purpose is to give you an insight into the chronic illness.

 

I believe the best video to explain the condition is What is PoTs? (YouTube, 2017)

 

A brief explanation of the condition here based on reading (NHS-U.K, 2017) is; PoTs occurs when the autonomic nervous system which cannot function properly. 

Autonomic nervous system?

” If this is the first time you’ve heard that, you are probably thinking what the hell is that”.

Let me break it down for you. The Autonomic nervous system controls everything your body is suppose to do without having to think about the action.  For example, breathing, sweating, digesting food and drink etc.  

When someone with PoTs sits or stands their heart rate increases to abnormal levels because the blood to their heart and brain decreases. Subsequently, this is likely to cause them faint or feel dizzy amongst other symptoms. Not everyone shares the same symptoms, and someone does not need every symptom to have PoTs.

“There are different types of PoTs, just to make things more confusing”.

 There are Hypo PoTs and Hyper PoTs,  which apparently even have their own sub-categories. I  will admit, I still know very little about the different types but I will try to give you a very brief overview.

Hypo means something in the body is running low. For example, someone has low blood pressure or not enough blood or enough oxygen.Hyper on the other hand is the opposite and everything is rocking high in the body.  For example,  high blood potassium or sodium.

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“The problem with PoTs, is you cannot see it – Around 85% of PoTs patients have been told their symptoms are only in their head (Dysautonomia International, 2014).

That is why it is not uncommon with invisible illnesses to live for years in pain undiagnosed or misdiagnosed.  Even when patients symptoms are taken seriously, they are  frequently misdiagnosed.  Misdiagnoses occur because of  a lack of awareness surrounding the condition – it was only officially recognised in 1993 (Stream,N.D).

PoTs is a bit like snapchat, both include filters. A Snapchat filter masks what someone truly looks like on the exterior. Meanwhile, in PoTS, skin is the filter that hides what is really going on in internally.

“I worry if I have PoTs – not about the illness itself, but how others will perceive it”.

I think it is cruel that skin can make someone appear perfectly healthy, when they are really fighting an uphill battle.   I have already experienced discrimination due to my EDS and I fear this could happened again if I become diagnosed with PoTs.

“My journey for a PoTs investigation began when I was diagnosed with Ehlers- Danlos syndrome III (EDS)”.

 

I was asked that famous question, “What symptoms do you have?” I took a deep breath and reeled of my list of symptoms. I stated in the past the following had happened;

  • I can’t bear standing up without being in pain
  • Chronic fatigue – I am always tired despite how long I sleep
  • I had episodes of fainting and a history of low blood pressure
  • I felt better laying down in dark rooms
  • Palpitations
  • I experience regular headaches and stomach pains and…
  • I can hear sounds others can’t.

 Ear-PNG-HD

Hearing things others can’t…

I feared being honest would sound like Harry in the Chamber of Secrets when he was told to follow the spiders and I would be rapidly carted off to a mental hospital. I didn’t know which was more alarming.

The fact I had been honest or that the doctor look back at me like this was normal. I quickly realised to her this was normal for an EDS or PoTs patient. The doctor explained to me that people with PoTs are more sensitive to sounds and experience the other symptoms I listed.

The rheumatologist explained what PoTs was, stated that it is common for people with EDS to have it and recommended I went for an investigation. I agreed and the process was underway.

 

To find out what happened next…

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COMING SOON: POTS: Part 2 -Referral to Investigation


Over to You

I would love to hear from you!

Whether you have found this post useful, know someone who has experienced PoTs like symptoms or has a diagnosis.

I hope you have a good day,

Morgan x



References

Dysautonomia International (2014). Dysautonomia International: 10 Facts Doctors Should Know About POTS. [Online] Available at: http://www.dysautonomiainternational.org/page.php?ID=180 [Accessed 22 Aug. 2017].

 NHS-U.K. (2017). Postural tachycardia syndrome (PoTs) – NHS Choices. [Online] Available at: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx [Accessed 22 Aug. 2017].

Stream, C. (N.D). [Online] PoTS UK. Available at: http://www.potsuk.org/gp_guide [Accessed 22 Aug. 2017].

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