When I was first diagnosed with lymphoedema back in 2005, the specialist told me that my lymphoedema would never go away, that I would have to wear these (hauls a sample pair out of the drawer of his desk) compression garments every day for the rest of my life, and that I would have
to elevate my legs all the time (how do you do THAT and have a life???).
I still feel very emotional when I think back to that day. I was angry, and I had no idea of what the lymphoedema journey ahead of me looked like. It’s been bumpy to say the least – I almost lost my life to septicaemia, and because of lymphoedema I’ve had to make many adjustments that I’d rather not have had to make. I’d love to go back in time and sit beside that younger version of myself with
the knowledge I’ve acquired since then, to offer myself some reassurance, some wisdom, and some hope.
These are the things I’d love for her to have known back then.
1. One day you will love and appreciate your compression garments!
2. There are things you can do to make sure your lymphoedema doesn’t progress – BE PROACTIVE.
3. Lymphoedema is very expensive.
4. Your food choices change the way your lymphoedema shows up.
5. It is vital to clear the lymphatic fluid at every possible opportunity.
1. I wish I knew that I’d love and appreciate
my compression garments one day!
When that specialist hauled those compression garments out of that drawer I about lost my mind. I still feel so angry about the way they were presented to me with what felt like a little disdain. Since then I’ve run the gamut with how I feel about them – I’ve hidden them often, and on the rare occasion I haven’t hidden them I’ve experienced some pretty insensitive comments.
But you know what? I wear compression 24/7 except when I’m in the shower or swimming or walking on the beach – I even have night-time compression garments – and I am SO GRATEFUL that I live in these times where we even have compression garments. My day time garments hinder further swelling, and my night time garments clear any lymphatic fluid that might have built up during the day. I couldn’t give a shit what people think of them now. They keep my skin in amazing condition, and they minimise risk of infection by keeping the lymphatic fluid to a minimum. Do I wish I didn’t have to wear them? Of course. But my gratitude is endless for their existence.
If I could have that time over again, I would have been so diligent and compliant with my compression, and I would have done whatever I could to make sure I had my day time garment prescription renewed every 6 months for the best protection against swelling.
2. I wish I knew that there were things I could do to make sure my lymphoedema didn’t progress.
I remember seeing some pictures of advanced lymphoedema when I was getting treatments in the weeks after that appointment, and I don’t know why but I really thought that was where I was heading no matter what I did. Those pictures scared me. A lot.
Anybody who has googled lymphoedema would be frightened by the images they find on the internet.
I didn’t understand back then that there were things I could do every day to prevent progression like diaphragmatic breathing, exercising and changing my diet (though to be fair I don’t think that was even a consideration by ANYBODY in the lymphoedema world in 2005).
If I could have that time over again I would have left the door to HOPE wide open, and not given up on my legs. It feels very much that I did give up by ignoring that diagnosis – I left my body to fend for itself without any support from me. You must be proactive with lymphoedema!
3. I wish I knew that lymphoedema was going to be very expensive.
My compression garments cost approximately $4000 every year.
I recently purchased a compression pump which can cost several thousand dollars depending on which one you get – please though check with your qualified lymphoedema therapist about the appropriateness of using one of these. There are some pumps out there that are not appropriate for lymphoedema.
Private health insurance offers very little in the way of rebates for these items but I am fortunate to be living in one of the states in Australia where I can have 80% of SOME of my garment expenses funded by the government subsidy scheme. So grateful.
Manual lymphatic drainage (MLD) with a properly qualified therapist costs anywhere between $150 and $300 per session and considering that lymphatic fluid builds up every moment of every day, that cost alone can break the bank if drainage needs to happen several times a week.
Complex decongestive therapy (CDT) – considered the gold standard of lymphoedema treatment – costs between $400 and $600 per day and that isn’t accounting for the equipment costs … for 8 weeks of CDT, this cost is out of reach for most people. CDT should be within the reach of every person with lymphoedema.
I think if I’d known how expensive it was going to be, I would have tried harder to take those daily steps (diet, compression, and exercise) to mitigate progression, especially the ones that are not so expensive.
If I could go back in time I would have asked that specialist a bazillion more questions about how I could prevent progression and what surgical options might have been available to me.
I would have learned all the good MLD moves from a therapist in the early days. It’s not enough just going to treatments and allowing the treatment to happen to you – pick the brains of your therapist while they are your captive audience.
If there’s anything I know now about lymphoedema it’s that nobody is coming to save you, YOU’VE GOT TO SAVE YOURSELF by learning and listening and asking questions of everybody who is appropriately qualified and in this field.
Just like it is with so many other chronic health conditions, we really do need to be our own best advocates, we need to learn and take responsibility for our own condition, and fight for
ourselves. Don’t yield to it!
4. I wish I knew that my food choices would change the way my lymphoedema showed up.
Actually, I did know that food would change the way my body showed up – I’ve been convinced of this for a very long time and it’s the reason
I chose nutritional medicine as my career. I guess what I wish I’d known was how drastically food makes a difference.
Food choices 100% change the way your body shows up no matter what kind of health you’re in. When our lymphatic system is compromised, it’s so important to care for the parts that ARE working, and food choice is a major component here. We need to nourish our skin with our food choices so that it can maintain a healthy barrier to prevent infection, the lymphatic and vascular systems in our body need nourishment to prevent further overload of the lymphatic system, and we need to avoid adding a fluid retention problem to our lymphoedema by ensuring we are well hydrated.
If I could do that time all over again, I’d use some variation on a very clean low carbohydrate diet with plenty of healthy fats, and healthy animal based proteins. There would be no alcohol, no highly
processed foods, no sugar or sugar substitutes. I can help with those kinds of changes!
5. I wish I knew how important it was to clear
the fluid at every possible opportunity.
I spent the first 4 years after my diagnosis pretending as though I didn’t have lymphoedema and because of that my condition worsened. The more I let the fluid build-up, the more exposed I was to infection,
and yes that’s where I ended up. I got septicaemia from a blister on my little toe from
jogging. That life-threatening infection has increased my risk for further life-threatening infections and it has altered the tissue in that foot.
If I could do that time all over again, I would have cleared the fluid at every opportunity I got. I would have worn the garments, learned the MLD, done the diaphragmatic breathing, really cleaned up my
diet, continued with my strength training and exercise.
You can have a beautiful life with lymphoedema too. It takes some effort, but you’re absolutely worth it. Let me know if I can help firstname.lastname@example.org