#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

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Have your Say 

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


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Lots of Love,

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