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.
- 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
- 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
- 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
- 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.
- 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.
- 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
- 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.
- 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.
- 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
- 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.
- 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.
- 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
- 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
- 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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Lots of Love,