My daughter is travelling around the world for a year and we think she is travelling with lipoedema.
I have suspected she has lipoedema for some time and we finally talked about it before she left on her trip. She has graciously written a post about what it is like to travel with suspected lipoedema.
Last week she let me put a post on the socials showing her legs. Mind you, they’re beautiful legs and she is tiny, but if you have stage 1 lipoedema you know it’s more about the symptoms, not the appearance. You can read the post on my Facebook page here.
Here is her first guest post:
There was a series of events that made me start to think I might have lipoedema.
The first was a yoga class, my first in person after spending a year doing almost daily yoga classes online.
I was feeling pretty good about myself and thought about how I would be receiving A+ marks from the instructor after class. She did approach me after class, but it wasn’t to tell me I received an A+, but whether I was aware I was extremely hypermobile (yes), and was in any pain from it (no). She was quite shocked by my answer and recommended instead of yoga I take up Pilates or strength training because if my hypermobility wasn’t affecting me yet it would be soon.
The second was at said Pilates class, when my instructor was holding onto my ankles and said I had a lot of fluid in them. She pressed my skin and showed me how the patches lightened and said that was generally an indicator of fluid and recommended putting my legs up at the end of the day.
Now, I’d ignored my mum, the lymphatic massage therapist, long enough to know that there was a connection in these, and a connection with every time she told me to ‘go have a play in the water’ when I complained about my legs.
So, by the time I left for my year of travel, I had been digesting the idea I had lipoedema for around a year.
Between my independent research and commandeering conversations with my mum over breakfast about the state of my legs and what I should do, I had a pretty good idea about conservative treatments at home.
On a regular basis, I attended Pilates and barre classes, walked daily, occasionally wore the compression garments Mum advised me on, and dry brushed infrequently.
Before I left for my year of travel I thought about pursuing a lipoedema diagnosis. In the end, I decided that even if I had an official diagnosis I was 100% likely to not follow guidelines to help manage it while travelling.
Through my research, I’ve seen one of the main recommendations is to avoid excess carbs. But when you’re vegetarian and your options when travelling include choices like, should I drink a beer for $1 or a wine or spirit for $4, I’m claiming fiscal responsibility by drinking a beer for $1.
Unfortunately, a lack of diagnosis doesn’t mean that any kind of symptoms, whether lipoedema or not, didn’t affect me.
Whether it was being in Asia and eating more rice and drinking more beer than I usually do, making me feel bloated and inflamed, or taking a night bus sitting in upright seats in Egypt for 10 hours and waking up with rock-hard legs that were tender to touch, there’s only so much you can ignore.
And, honestly, these are only some of the examples that manifest in a more medically diagnostic way, it doesn’t change the time spent in front of a mirror, frustration and disappointment, it doesn’t change wearing a maxi skirt over shorts because you don’t want to look at yourself.
Along the way, I’ve had to incorporate conservative treatments like putting my legs up against the wall to drain fluid and massaging my legs out after overnight buses.
In a town in Namibia I found a health food store and bought a dry body brush to replace the one at home I knew I should have brought with me.
I pack my compression socks in my carry-on bag with good intentions but sometimes don’t put them on because I forget until I’m on the flight and don’t want to put a stranger through witnessing the struggle, or because I’ve accidentally run over my toes with my suitcase trying to load it onto a bus and am bleeding everywhere (true story).
There’s no perfect solution to travelling with suspected lipedema, or even dealing with that knowledge at home. But for me, unfortunately, symptoms weren’t something I could just ignore indefinitely, but even small changes helped to make a difference.
To follow Bess’ travel adventures you can find her on Instagram at @bessoftheworld.
You can read more about what to do when you have a new lipoedema diagnosis here.