#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;

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 #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?

 

 

 

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.

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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.

 

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.


okay

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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 I would love it if you shared this post to stop other students suffering.

*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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About Me

Uncategorized

me

Hi world,

To give you a bit of history on me. I am Morgan, a 24 years old Business Student at Oxford Brookes University diagnosed with Ehlers Danlos syndrome III at 23.

cropped-me.jpgBefore, we start you may want a brief overview of  EDS.

EDS’s are a group of rare inherited conditions that make connective tissue weaker*.

* In some instances, EDS can occur in someone without being inherited. Connective tissue is important to support skin, ligaments, blood vessels and internal organs. There are different types of the condition I will explore in another post. However, all types of EDS are affected by weak connective tissue and loose joints.

Unbeknown to me, my journey to illness began in the womb. Many ask me when EDS will end. The response is morbid. The truth is EDS will end when I die because it is incurable.

If you are one of the rare ones who has heard of EDS, you are probably wondering why I am writing this post. I can’t lie, I do worry each second I will dislocate my wrists or fingers. Yet, I still write.  Typically, my posts will not be this long. I just wanted to be completely honest with you from the get go.

“Although, some might consider me disabled I am not EDS – it is just a huge part of me”.

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It is not unusual for people to see an illness before they see a person.  With EDS, its the opposite.   You are only ever likely to see the illness if you know the sufferer well.. because on the surface it’s invisible.

“People don’t understand when I can’t do daily tasks”.

Due to the lack of awareness of it people have the wrong misconception that I am extremely lazy – even I believed this for a long time before the diagnosis.

“Unlike many other suffers of EDS, during  secondary school I never knew I was different”.

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I made every excuse to get out of P.E because I was in pain but it did not work. I was told I was gifted at gymnastics, whilst I flew into the splits and was doing cartwheels across the floor. I  experienced subluxations and dislocations but I thought this was normal. Instead of speaking up about my pain, I turned my attention to being naughty. I got myself excluded more times than I can remember. Teachers thought I was attention seeking but really my fatigue was so bad, I just wanted to sleep.

I did not have a functioning life for many years“.

I scraped my GCSES but did not care because I aspired to be an artist. I enrolled in college when I was 16 and gain when I was 19 and dropped out both times. I preferred to spend my time drinking alcohol and taking  drugs to relax my body.

art

This put I in a downward spiral because when the substances wore off the pain heightened. As a perfectionist, I realized art was not the right career path for me and kept it as a rare hobby.

It became more apparent my body was weak when I coughed so hard I moved a disc in my back and landed myself into hospital. Despite this, for many years GPS would not accept I was in physical pain.

Are you sure you are eating your 5 a day?” the doctors asked.

I was sent to see CPNS, complex needs and CAMHS who described me as ‘mentally troubled’.   The hardest part of my journey is my parents were not completely convinced of my pain either.  If I dare mentioned that four letter word,  they would say ‘Here she goes again, she is having a Morgan Moment’ – alluding  an impulse of craziness.

“I felt like I had no one and became suicidal”.

Going to the doctors and hospitals were weekly chores.  I was always poorly yet, no one could find anything wrong with me. I thought perhaps after all this time the doctors were right and it was in my head.   So I attended Complex Needs, High Wycombe where I spent time with mentally ill patients . It was there  I realized I was not making up my pain.  Me and the other patients did not share any symptoms in common – yet I did not want to live another second suffering.


From then to now…

From time to time I still feel suicidal, but I have come a long way since I was 17. I enrolled into college again when I was 21 to do Business and completed the course. I drink alcohol occasionally but I do not take illegal drugs anymore. Don’t get me wrong, the temptation is still there but I am trying to live a healthier life.  My diagnosis has made this easier, with the support from my family and friends.

Me and my family a few years ago.

“By my own admission, socially I am unreliable”.

A lot of people  stopped wanting to be my friend.I never know if I am going to have enough energy to see my friends. Going out for a meal, or to the cinema takes me to the point of physical exhaustion.



University life…

I started University 5 years late compared to everyone else because I mentally and physically would not have coped.  Due to low blood pressure I spend a lot of time in bed. I was also diagnosed with Dyslexia, Dyspraxia, photo-sensitivity and a vitamin D deficiency.  I was told the course would be too difficult for me to succeed and to think of a vocational alternative. Through blood, sweat and tears I managed to prove everyone wrong and pass the first year.


Allergies, Intolerances and Me”…

I was born lactose intolerant but after a few years I was given the green light to drink milk again.  In hindsight, whether the intolerance ever went away, I am not  sure.  I developed OCD because each time I ate I would be sick or have the shits.  I was uncomfortable food caused me pain but I liked the fact I was super thin.

I was often mistaken for being anorexic“.

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When I was 21 years old, I went into severe anaphylaxis. Shortly, after an allergy prick test confirmed I  had developed an allergy to nuts and gluten. The test also showed I was lactose intolerant.

In my head –  I was  a freak. I had never met anyone else with multiple food allergies.

nut

“Changing the way I ate was the hardest thing I have ever done”.

I am in love with sugar and I can’t really cook that well.. Living off processed TV dinners and comfort food was my safe haven. The task to change my diet, was almost impossible for me. Doctors became concerned I would die.

I began to see an Adult Nutritionist for months religiously, who was my rock. Without her, I would not be here writing this today.

 


Share the Love

I would love if you supported me and followed/ liked my new Facebook page.

I do not know if this blog will be a success or not- but I need a hobby for all the hours I spend ill in bed. I really want to use this space and start up a YouTube channel to discuss content on mine and other peoples conditions to  raise awareness.

I also want to provide support to anyone who feels they are alone.


Thanks for meeting me.

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