Travels with lymphedema

Posted: August 29, 2016 in Miscellaneous
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Good morning.  First of all, apologies to my regular book review readers.  This blog post is somewhat off topic, but I felt I wanted to write about it.  Feel free to skip it or pass on to someone who may find it interesting.  I will recommence regular book reviews shortly, I promise!

I’m not sure if I’ve mentioned it on this blog or not, but I have a condition called lymphedema which means that my lymphatic system isn’t great about moving the lymph fluid around my body.  This means that without management, it collects in my lower extremities leading to swollen, uncomfortable feet and legs.  Normally this is well managed by my compression stockings.  The other issue with lymphedema is the risk of cellulitis infection.  The lymph fluid is extremely protein rich, so it is basically an all you can eat buffet for bacteria.  If one gets in, it invites all its friends and the infection can go very bad very quickly.  That is what happened to me after my vacation.  I got an infection that sent me to the hospital for a couple of days for IV antibiotics.  Fortunately, I reacted quickly this time and was able to get treatment before it got too bad. 

The lessons I took from that is that vacation is not an excuse to neglect basic skincare, which is a cornerstone of lymphedema management.  My infection was probably due to a whole combination of things; rushed skincare, long periods spent travelling without getting up to move around, poor maintenance of my compression garments.  In other words, I need to be more aware of the basic requirements of living with lymphedema and speak out to ensure they are being met.  Lesson learned.

It got me thinking though.  What words of advice would I have for someone newly diagnosed with lymphedema, perhaps someone younger and more active?

First of all, I would explain that I am not an expert, simply a fellow traveller perhaps a few miles further along the road.  The tips and techniques I have picked up have worked for me, but they may not be be appropriate for every situation.  When in doubt consult with your lymphedema support team.

Secondly, lymphedema is a scary diagnosis to hear.  It cannot be denied; managing lymphedema takes hard work, commitment and lifestyle changes, none of which are easy.  However, with the right professional support and attitude it is very possible to keep on top of the condition.  If I can do it, anyone can.

Build your support team.  My doctor was able to refer me to the extremely knowledgable and passionate Dr Anna Towers and the amazing lymphdema therapist Lina Desmenins.  These are both wonderful women whom I am privileged to have in my corner.  I understand that it is not always easy to be put in touch with the appropriate resources.  Here in Quebec the Lymphedema Association of Quebec acts as an invaluable resource point for patients and practitioners dealing with lymphedema.  I imagine there is a similar organisation in each province/state.  That would probably be an excellent place to start.

Put together your tool set.  Lina likes to refer to the various techniques for lymphedema management as tools in a toolset.  I find that a very positive way of looking at it.  As tools, they put you in control; they can be used as appropriate to manage your lymphedema.  Together, you and your lymphdema professional will put together a tool set which is apppropriate for your particular situation.  You will almost certainly be introduced to compression bandaging, compression garments and basic skincare, which are the cornerstones of lymphedema management.  Others include manual lymphatic drainage, weight control and exercise.  I am certain there are others, of which I’m not aware as they were perhaps not the most appropriate tools for my situation.  Now, I won’t pretend that the tools are always easy or fun to use, but they are effective and they do their job.  I don’t think anybody really enjoys compression bandaging.  Your lymphedema specialist will also provide guidance as to which tool is most appropriate for the situation.  I know on several occasions, I’ve followed up with Lina asking exactly that question and always received invaluable support and advice.

There will be setbacks.  See; above.  I can also remember being in tears in Lina’s office at the thought of having to continue bandaging for a few more weeks in a hot Montreal summer.   With Lina’s support I got through it and continued to reduce the fluid in my legs considerably.  Lymphedema management isn’t a slow straight line of improvement.  It’s more like a series of peaks and troughs, hopefully always heading in a positive direction.  It’s best to be prepared for that.

Find something to motivate you.  For me, exercise was an important tool in my toolset, especially walking, something I didn’t generally enjoy.  I invested in a pedometer (a FitBit to be precise) and I found that was a great motivator for me.  At first I really struggled with it.  Even hitting 5000 steps a day was a challenge at the beginning.  The recommended 10,000 steps a day seemed very difficult to achieve.  Nowadays, most days when I’m not working I can easily do 10,000 steps and it’s not a problem at all.  Seeing the number of steps I could manage increase slowly was a real motivator for me.

These days I jog as well as run.  I have been working through the Couch to 5K plan which takes you from being a couch potato (me, to a T) to being able to tackle a 5K run.  It builds you up over 9 weeks with walking/jogging intervals starting at jogging for 30 seconds until you’re jogging for 30 minutes straight.  I found this a fantastic program, although that jump from 8 minutes jogging to 20 minutes jogging in week 5 is a real hurdle!  Do I enjoy jogging?  No.  Is it a struggle?  Yes. Am I fast?  Heck no – a tortoise could overtake me.  But I can take real pleasure with Chariots of Fire playing in my ears pretending that I’m running along that beach with all those Olympian hopefuls from the movie.  I can also take great satisfaction in seeing that this week I ran for 25 minutes whereas last week I struggled with 20 and several weeks ago five minutes was a challenge.

One of the things I regret most about my lymphedema is not being able to wear cute shoes.  So when I was finally able to move from compression bandaging to compression garments I hunted around until I found a cute pair that would work with my feet:

IMG 0031

I was so happy to find them!

Take pride in your achievements. Living with lymphedema is not easy, so when you achieve something, own it.  I am very proud of the circumference reduction I’ve achieved in my legs.  It’s taken a lot of work, but I am very happy with the result.  Earlier this year, I also completed my very first 5K fun run.  OK, it was more of a 5K power walk, but I did it and I have the participant’s medal to prove it.  It is so important to value these moments to get you through the tougher times of lymphedema management.

I think that’s about all I have to share on this subject. I hope you’ve found it useful.  If you have any comments or questions, let me know in the comments.  Thanks for listening!

Travels with lymphedema was originally published on Canadian eReader

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