#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

Facebook page

WordPress

Twitter 

Instagram

Pinterest

Thanks for Reading

Lots of Love,

my name

#EDSAwarenessMonth Blog Challenge

Chronic Illnesses, Invisible illnesses

 

zeb

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.

my name


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?

 

 

 

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?

IMG_0608


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.

 

 

 

This slideshow requires JavaScript.


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…

IMG_0602


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

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

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


    “The Ehlers Danlos syndromes evil natures

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

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


                                              Could you have Ehlers Danlos Sydrome?

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

Coming soon

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


Sharing is Caring

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

Have your Say

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


Join me on my journey on social media.. 

Facebook page

WordPress

Twitter 

Instagram

Pinterest 

Thanks for reading,

Lots of love,

my nameRelated post

About me