EDS Awareness Month (day seven) – comfort

The pain is too much so how do I find comfort and support my joints? Initially when I visited my physiotherapy team I was fitted with various braces, these are great for helping reduce the range of loose movements within my shoulders, wrists, ankles and knees.

Heat pads and hot water bottles are good when I find the pain is just too much and I need to snuggle up, it gives me a good comfort level and seems to reduce my anxiety levels too.

A nice warm bath BUT I have to be really careful with this one as it can more often than not cause me to have a postural tachycardia attack. So I have to ensure I am supervised.

There is one item on my wish list for comfort and that is a weighted blanket, I have heard a lot of positive things about these, they aren’t cheap but they are meant to help with sleep and pain levels. One day I will be able to afford one🤞🏻

What items do you use for comfort?

EDS Awareness Month (day six) Management Strategies

So you have been knocked sideways with pain, now what? How to manage that 10/10 pain that you are struggling with!

Since I came off my opioids I have learnt various techniques, some have been taught by my occupational therapists, some self taught. Therapists taught me various methods of mindfulness, I often felt this was less than helpful but I have now become seriously invested in using this tool to take my mind away from the pain and where it is.

Secondly I use heat, a hot water bottle applied to the point of the pain can be really helpful. It seems to release the muscles and tension, thereby helping reduce pain levels.

Finally distraction, doing something, anything apart from concentrating on the pain I am in. I have watched box sets, read a book or just surfed the internet. It honestly works.

Previously I was on high doses on medication and it was not helpful at all, it was just numbing me as a person, so try alternative options and see if they help.

Good luck 🍀

EDS Awareness Month (day five) – School/Teachers

Being diagnosed at 45 meant that all my years in education I was not acknowledged for having this condition. However I could tick all the boxes. My teachers would think I was just trying to avoid class and behaving like a hypochondriac. It was a standing joke that I was always the “ill one” not something I look back on with pleasure, that is when the bullying started.

I had needed braces fitting due to dental problems, teachers and the school could not see the signs of what was going on during classes and at break time BUT girls were mean, especially in my “informative years”

I reached out to my school and explained how hard I was finding things, bearing in mind I was in pain, hypermobile, sublaxing joints, without knowing why? It was felt I was too sensitive and needed to “pull myself together”

I hated not understanding what was wrong and why no one could help. Needless to say I wasn’t a fan of school or the teachers, however this was the early 80’s, I would like to think that 40 years later the education system is much more supportive.

So we really need to bring awareness of EDS to all walks of life, including our educators, as they are more often than not the first point of contact for a vulnerable EDSer.

EDS Awareness Month (day four) – A Day with EDS

#MyEDSChallenge

No two days are the same, sometimes bed rest is the only option!!

When I initially fell ill, I ended up bedbound for months! This obviously impacted me greatly as I had previously been very active (a special constable for TVP) and also had a full time job as a accounts assistant. To lose my independence was a huge blow, I am still coming to terms with it all these years later.

Most days with EDS now involve ensuring my medication is up to date AND remembering to take it.

If I’m having a tough pain day, this will be either a bed rest day or a chill on the sofa, catching up on TV. If pain is manageable I have a list of jobs that need to be done, day by day for the week. This way I can mark off what I’ve done and feel a sense of achievement. I never push into pain, if I’m dizzy, struggling with pain or just run out of spoons, I stop !

For my gastro issues I now only have meal replacements for breakfast and lunch, this resting of my stomach means I can try and eat one small meal a day, hopefully without too much pain or other issues.

Having hubby as my full time carer means I’m never left alone or struggling.

EDS Awareness Month (day three) – Symptoms

#MyEDSChallenge

EDS Awareness Month (day two) – Diagnosis

Dec 2014 – Long Hospital Admission

In 2013 I was diagnosed with PoTs after two years of head scratching by various specialists. Thankfully my neurologist picked up that my heart rate was unusually high for someone on beta blockers. He performed a poor mans TTT and felt there was an issue. After my full TTT and lots of questions about flexibility, it was decided I would need a rheumatologist to assess my condition. PoTs being one of the comorbidities of EDS.

Another year later and in 2014 I got my EDS diagnosis at the Stanmore Hospital, it was a worrying time because then I knew nothing about Ehlers Danlos but overtime I learnt more about how to manage the pain, brace my limbs if they were struggling and just understand fully why my body was struggling, on various levels.

Over the years I have to thank the London NHS hospital’s for the excellent care. Guys and St Thomas’ (dental and ENT) Charing Cross (neurology) Royal London (gastro) Stanmore (rheumatology and shoulder reconstruction) King’s (cardiology)

#myedschallenge

Get ready for EDS awareness month!

The Ehlers Danlos Society has set a little project for the May 2021 awareness campaign.

This year it is a Social Media Challenge – one of the Acts of Awareness Challenges to raise awareness of EDS and HSD! Use the daily themes as prompted in the picture for your social media posts, photos, or videos, and use the hashtags #MyHSDChallenge and #MyEDSChallenge. ⁠

Learn more from their website : https://www.ehlers-danlos.com/may-awareness/social-media-challenge/

Join in and help make the #invisiblevisible ❤️
⁠

May – EDS Awareness Month

May is EDS and HSD Awareness Month!

For many people, the journey to a diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) has been a long and challenging road. Poor awareness of the conditions amongst medical professionals means they can go undiagnosed for many years, with people often being misdiagnosed with other conditions, being given incorrect or unnecessary treatment, or no treatment at all. Early diagnosis, and recognition of EDS and HSD, is key to improving quality of life.

A better understanding of EDS and HSD in primary care could make a huge difference to the day-to-day lives of many people struggling to manage their symptoms. Most GPs will not have had any specific training on EDS or other hypermobility-related disorders and therefore their awareness is not high. The EDS toolkit (one of many on the RCGP website) provides GPs with the best sources of reliable, up-to-date information to support you better.

Understanding of the complexities and multi-systemic nature of EDS and HSD from medical professionals in all aspects of care, including rheumatology, physiotherapy and nursing, can ensure a quicker diagnosis, and more accurate, and beneficial care.

Societal awareness and understanding of these conditions, their comorbidities, and chronic illness can also vastly improve the lives of our community. From education to employment, from relationships to friendships, and in understanding disability and often-invisible illness: understanding the impact these conditions have on our lives, and their fluctuating nature, goes so far in improving wellbeing.

May is EDS and HSD Awareness Month – let’s join to raise awareness together. We may not be connected physically, but there is still so much we can do virtually! Keep reading to find out how you can get involved this May. (Shares from Ehlers-Danlos Support UK)

#edsawareness #ehlersdanlossyndrome #hypermobilityspectrumdisorder #hsdawareness #zebrastrong #letsmaketheinvisiblevisible 🦓

Thank you to @EhlersDanlos UK for providing this information for me to share

Look out this month on the blog as there should be more awareness information added

Stay safe and stay home ❤️🦓❤️🦓