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