The EDS Lass writes about life with EDS, articles on relevant topics 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 often shared.
I had to rest after the city break. 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.
The EDS Lass 