The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey.
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Living with EDS can be tricky at best. After my health issues started and I was diagnosed, I put a lot of thought and consideration went into how to manage and how to approach life with EDS. The following are my thoughts of living well with EDS.
There is no doubt that living with a chronic condition brings many types of challenges; the symptoms themselves, accessing appropriate healthcare, navigating assumptions made by others, all while dealing with everything adult life involves. While EDS can present differently for different people, there are common experiences that are often shared.
I had to rest after the holiday. I used this time to sort and edit photos
Energy, fatigue & pacing
Fatigue is common for those of us with EDS. This can be tricky, both because it means we can do less on certain days, but also as levels of fatigue can vary and can be unpredictable. In turn, others looking on can be confused about why it varies.
Only each individual knows how they are feeling and what they are capable of doing each day. If someone tells you they are having to manage their day due to fatigue (or another factor), its simple; believe them and respect it.
Pacing is valuable. It took me a decent amount of time to first accept this concept, and to work out how to pace. The difficult accepting it is knowing time has already been lost, due to lack of healthcare.
I have pushed too hard on some days, to know that trying to make oneself keep going, on an EDS-y day can be ok (if the next day can be more of a rest day), but can really backfire.
Accepting this is really tough, but can make all the difference in living as well as possible.
I am foruntate in many ways, inclduing that I love learning and research, both of which can be done at home / while resting. On fatique-y days, I make the most of what I love doing, from home.
Rest & Movement
Both rest and movement are important (and will mean different things to different poeple). I have previously, when I was particularly unwell, did not yet have a diagnosis and had been told to rest, become deconditioned. This in turn had a negative effect.
I have had to work out, over years, post EDS diagnosis and through various effects of EDS, find the right amount of rest and movement.
I was delighted to find Jeannie and The Zebra Club. If you have not heard about her of her platform and app, I highly recommend having a look! https://www.thezebra.club/. She focuses on positive movement for the EDS and hypermobile person.
I loved, over the years, pilates, swimming (I LOVE being in water), walking and was an occassional member of the gym. After being particularly unwell with extreme fatgue, I was able to return to some exercise, which I am lucky to enjoy again.
For rest, I have made home as comfortable and as lovely a space to spend time in as possible.
Understanding & Accepting EDS
Getting my diagnosis of EDS made sense of what my body deals with to get me through each day. Understanding and accpting this has helped me to look after my body, including accepting (or trying to!) that some days vary and plans do have to change. This has been challenging and continues to be so.
Identify what works
Over the years I have tried different ways of managing EDS. Something have help, and I have tried to adopt them into daily or weekly life.
Accept help
I dislike asking for help. With an invisible condition, others can not see that I need help. For years I was told by healthcare staff that there was nothing wrong. I knew this was incorrect, and as I got worse (in my healthdown fall from 2016-2020) I knew something was really physically unwell. I asked for help from healthcare may times, and the answer again and again was no. Being denied help after asking for it (and knowing it was needed) is uncomfortable at best. Part of accepting I have EDS was accepting I do need to ask for help sometimes. How this feels depends on the person I ask for help, and how they react. Thankfully, in general, in my experience, people are happy to help. I am comfortable talking about EDS and explaining what it is, which helps.
In London, the travel network provides badges for poeple with health conditions, requesting that a seat is offered if needed. I ordered one after my diagnosis and have it in my bag. When the tube is busy, perhaps 80% of the time, people do offer a seat. When they do not, there is an uncomfortable familiar feeling of asking healthcare staff for help and being told ‘no!’. Overall, though, Londoners do seem willing to help others.
As said above, life with EDS can be difficult, and EDS people have varing experiences. The above is my brief reflections on how I have thought about it all, a few years after diagnosis.
The EDS Lass 