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

EDS Awareness Month (Day One) – This Is Me ❤️

Hi my name is Sarah, I am a 50 something! 😉. Married to Andy for 29 years later this year and Mum to three very grown up children. In March I became Nanna to two wonderful grandchildren.

My EDS Challenge

My EDS story started with a headache, after two years of multiple tests and hospital appointments, I saw my neurologist who suspected I had PoTs, was sent for a TTT and yes I was struggling with the condition. At the time of the test I was asked about “hyper mobility” having never considered my flexibility an issue, it now appeared there was a condition I had never heard of and I may have it

In 2014 I was formally diagnosed and that is where my Ehlers Danlos journey began, I’ve seen numerous consultants, had multiple test and feel I have a good understanding of my health

Most of all it’s about me managing my condition as best as possible, not allowing it to manage me !

This month is all about #myEDSChallenge and raising awareness for these invisible and very chronic illnesses

#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 ❤️
⁠

What is EDS?

Firstly as of 2017 there are now 13 different types of Ehlers Danlos Syndrome, many being extremely rare! However now the gene mutations have been recognised it is possible for a patient to be tested in all variants apart from Hyper mobile EDS.

Due to the complexity of the condition, no two patients have the same two symptoms, which is why it can take many years to get a diagnosis.

When seeing your GP, ask for a referral to a rheumatologist to discuss your concerns and always write down and problems you are having, how long you have been struggling for and also make sure you write any questions you may have, those initial meetings always are a bit intimidating.

If and when you get a diagnosis it’s a positive thing, it means you have known something has been wrong all this time.

Life without Pain Medication!

After my decision last summer to stop my pain medication, I made sure I returned ALL the strong pain meds to the chemist so I couldn’t fall back on my choice to live a life opiate free.

Now whilst I admit it was a silly idea to go cold turkey, I definitely couldn’t have done it without my family who stood by me as I thrashed about, cried, became so desperate I didn’t know what to do with myself but now we are out the other side I feel it was the best and only way I could get through it!

How do I manage now? Very occasionally I will have the odd paracetamol if my head pain is too much, if my joints are killing me, I try and use a warm bath or compress, I have just learnt that the meds were numbing me as a person and not my pain. Honestly my pain is no worse than the day that i stopped the highest dose of fentanyl. I have just learnt how to manage it better. Also trying to exercise, to build up the muscles, to support the joints and to not let myself wallow in the game of self pity or chronic illness bingo, it isn’t a game of who is suffering the most, more a case of who is surviving as well as is feasibly possible?

I know I still have my good days and my bad days, but I have learnt that I don’t need a stomach full of poison to get me through each day. For now life is better 🙂