Lymphoedema confuses me.
For years it has baffled medical professionals, so I think it’s only fair that I also struggle to grasp it. Just when I think I’ve got it all figured out, when I am convinced all is well, and just as I smile with confidence that I won’t let my condition define me, my leg says “no Josh, back in your box”.
Not literally of course that would be ridiculous. Although, I do find myself talking to my leg as if it could feel emotion. Feeling sorry for it if I get frustrated or blaming it after a bad leg day. Bizarre that.
Lymphoedema is incredibly sensitive. Too much of this or that and it’s time to rest. “This” being anything and “that” being almost everything. Diet, exercise, sleep, stress, posture, commute, sun exposure – you name it, lymphoedema loves and loathes it.
So, the difficult challenge we lymphies face every day is how to best tune our bodies and our environment, for minimal damage and maximum “normality”.
“But what is normality?!” I hear you cry.
I don’t know. Certainly not I nor any of you for that matter. I guess what I am trying to say is that normal, everyday tasks are difficult for those with lymphoedema so we have to work extra hard to keep things ticking over nicely.
But, even when I do everything by the book my lymphoedema can still flare in an instant. I eat my greens, exercise regularly, drink lots of water, perform massage and even frantically dance to the fates in the hope my leg will let me off the hook just this once. Alas, it doesn’t always go to plan – and I seem to have it a little easier than a lot of people with the condition.
Over the past few months I have started to engage with the wider lymphoedema community. Thousands of us around the world are sharing ideas, thoughts and tips in the hope of bettering ourselves and one another. What seems to be common among us all is that no matter what we do, we are guaranteed bad leg days. For some it is common (everyday), for others not so much. I see pictures posted of sore, swollen and sometimes infected limbs daily and understandably, those reaching out to the community seem to be running out of patience.
In my humble opinion, lymphoedema sits on a spectrum which is defined by genetics, routine and diet, and of course, whether your lymphoedema is primary or secondary. This means every person experiences the condition differently. Some swell more than others and some heal quicker. Some see reduced swelling overnight, some see minimal difference. For others, further health conditions aggravate their lymphoedema and vice versa. Our chronic swelling and impaired lymph nodes are complicated and do not deserve to be brushed aside as they have been for decades now.
A goal of mine for the year ahead is to observe more. The saying goes “things happen for a reason”. In our case, things i.e. symptoms, happen because of a reason, and although it is tedious at times, pinpointing our “swelling catalysts” are essential to our welbeing.
Of course, this is just my opinion. But I am a big believer in doing what is right for you. Where I sit on the lymphoedema spectrum is different to where you sit, and to learn where we sit we need to listen to the subtle signals our bodies are sending us.
Medical professionals, lymphoedema therapists and fellow lymphies, do you agree? Or am I talking a load of tosh – or “Josh-tosh” as my family call it? Send me your thoughts!