When I showed up for my first lymphedema related treatment at a physiotherapist, she informed me – in a bit of coldly manner – that there was a lot of things I was no longer allowed to do, because it would be harmful to my legs and potentially cause dangerous infections. She listed up a bunch of things, many of which I loved doing, that could not be part of my everyday living any longer. Already being a bit emotional with all these unforeseen, and for me unknown, side effects of cancer treatment and especially the gravity of lymphedema, I was heartbroken – and having all these new restrictions in my life did not make it any easier.
In the years that followed I got very ill in an incomprehensible amount of times as a result of my lymphatic system not working properly any longer. I was therefore scared of doing many things and I was constantly aware of the risk of getting sick with an infection once again.
But what I have found is that – even though many of the more conservative doctors do not find much sense in this – I need to do the things that makes me happy in a way to make my body stronger and more resistant. That’s why I do not hold back any longer, but instead do all the things I want to do – when at the same time being aware of taking care of my legs and lymphedema.
A healthy and happy mind is essential to a healthy body
I truly believe that a healthy and happy mind is essential to have a strong and healthy body; these two components are related.
And I believe that it will make your mind – and thereby your body – even more vulnerable in the long run if you do not stay true to who you are, despite your lymphedema. That is why I do the things I really want to do, despite my first physiotherapist’s orders; I just do it while being aware of a few, small limitations and while adapting to the situation of having lymphedema.
For example, I have always loved being outside; going for walks in the forest, going on canoe trips, climbing up trees and hills and so on. Being outside, doing all these things, fills up my “happy-meter” and simply gives me more energy in life. That’s why I find it essential to keep doing things like this, despite now having lymphedema – even though some of the things, I enjoy doing outside, might be found to be a bit risky in relation to my edema. But as I tell my friends: Climbing up a tree might be with the risk of falling down and breaking my legs, which would be pretty problematic in relation to my edema, but I need to stay true to what makes me happy and if climbing a tree does that for me, I just need to make damn sure not to fall down.
The same thing goes for taking a canoe trip in Sweden. That might not be the best thing; to sit upright in a canoe for days, blocking the lymph fluid in the hip area by the seating position, and with the risk of mosquito bites from those millions of mosquito in Sweden. But then I simply should use all possible protection sprays against mosquitos and at the same time be sure to vary my seating position in the boat (even with that resulting in really challenging my abs! But hey, who could not use some more muscle training in the belly area, huh?).
Also, one of the main rules, when you have lymphedema, is to be aware of your weight. Overweight can be problematic when you have lymphedema. I have made up my mind, though, that it would lessen my life quality in an extreme extent if I were to constantly worry about my weight and not once in a while eat the things, I really enjoy eating. Of course I cannot live off pizza and Coca Cola (I would not want to either, though), but I should be able to eat well-tasting evening meals and have unhealthy snacks during the weekend days. My normal weight is around 65 kg and I am 160 cm tall, so I am not in any way skinny, but as long as I keep my weight at a normal level, I believe it to be okay. This of course combined with eating relatively healthy with a lot of vegetables being part of my meals. (I will write an article about lymphedema and food later so stay tuned on that.)
Other lymphedema related restrictions goes to high heels, warm summer vacations and going into the sauna after swimming. I believe I can do most things as long as I adapt to my legs not being “normal” any longer. That means for example not walking around in high heels for 3 hours straight (you can read more about wearing high heels and other shoes in general here). Or not lying out in the extreme Egyptian sun without protecting my legs by lying in the shadow and only for a short while and having on the best possible sunblock. Or remember to get the legs up while sitting in a Finish sauna as part of a spa retreat.
In my opinion, you cannot stop doing everything you enjoy as a result of the fear of worsening your lymphedema or getting infections. Of course you need to be careful and take babysteps to try and see if there are things you can continue doing – perhaps in another way and adapting to your lymphedema limb now requiring you to be a bit more careful.
My lymphedema gave me a new and more holistic view on my body and mind and life in general. Staying true to myself is therefore an important part of my lifestyle because I believe it to be essential for me to stay healthy. However, staying true to myself also means adapting to my new self and my current situation. Lymphedema is – to me – not an illness; it has become a way of life.