First, let’s begin by asking “What is a Lymphie?” The simplest answer is a Lymphie is a person diagnosed with Lymphedema. Lymphedema is a degenerative condition caused by a malfunctioning or absence of the lymph nodes and their inability to transport lymph fluid correctly throughout the human body. It causes swelling in the affected area and is usually accompanied by a feeling of heaviness or pain. There are lots more symptoms depending on the stage and severity. You can be a primary Lymphie, like me, which is basically inherited. There are also individuals who are secondary Lymphies, who have had their lymph nodes removed or injured somehow. It is important to note how this condition because it provides the foundation as to how to exercise with it.
The Lymphie must be highly in tuned with his or her body first and foremost. Being in tune with your body does not mean giving in to mental negative thinking. What it means is that you need to approach reduction with a strategy and a plan to make the necessary modifications as issues arise. If you have pain, stop. If you are tired, rest. Eat well and nourish your body. Stay away from processed foods as much as you can. Drink plenty of water.
If you are a Lymphie and there is a voice inside your head that says you can’t walk, run, exercise, or be fit with Lymphedema. I’m going to say this as politely as possible. “Hey, that voice is a liar.” As with all things worthwhile, it happens over time with a strategic end goal in mind. Maybe multiple goals. In the business world, people often talk about goals being S (Specific) – M (Measurable) – A(Achievable) – R (Results Oriented), and T(Timely). I will share my story that way.
Specific Goals – Starting to Walk in Short-Stretch Bandages
Whether you are in Phase 1 or Phase 2 of CDT, walking in bandages is the very best thing you can do to reduce the volume of fluid if you have lower extremity lymphedema. The bandages exert what is known as working pressure against your system which helps the fluid be pushed up and out of your body. How can we be specific about this goal? In my case, I worked with my LE therapist. My therapist said, “Veronica, just give me 30 minutes 3X a week. If you don’t go to the gym, do it at your house. I don’t care how slow you go. You can go 1 mph for all I care. Can you go 1 mph for 30 minutes?” I was skeptical.
“In these huge post-op shoes wearing these thick layer of bandages? Are you serious???” My therapist looked at me over her glasses. “Do I look like I am joking?” Boy, that made me laugh. She said, “Make sure you follow-up by doing your LE exercises in bandages too.”
That evening I texted my coach. “Coach, don’t be surprised when I show up in post-op shoes. The therapist says I have to do this.” I sent her a pic of my mummy wrapped legs. I got the reply, “OK.”
The following day after my session with my therapist, I went to my gym class. I was nervous. I felt alone and embarrassed. Like someone had made the whole gym dark and a spotlight was shining directly on me on a stage. Coach comes up behind me and says, “Well, what are you waiting for?! Get on it. Let’s Go! Let’s Go! We don’t have all day.” I’m chuckling as I recall that memory. It was the exact push I needed to snap me out of that negative moment. I said “Coach, the therapist said only 1 mph.” Coach looks me straight in the eye and then wordlessly hit the speed increase button to 2.2 mph. I walked just fine.
Week after week during CDT, this process continued. At the end of CDT, I was put into 40-50 mmHg stockings. Later I modified to colorful stockings which gave me joy to wear in and of themselves. Then I had freedom to do more. Every few weeks I increased my speed to my comfort level. Sometimes Coach increased it for me without asking me. Humph. Some days I had bad days and skipped. Don’t we all? However, as each bar was passed, I created a new specific goal to achieve. Strength training is also part of the class. I would use the 3 lbs weights at first, then moved up to 5 lbs, and now I use 10 lb dumbbells.
Today I ran 5 mph as part of our High Intensity Interval workout. Remember, I started last Nov 4, 2014 at 2.2 mph.
What is your first specific goal?
Measurable Goals – Fitting into normal shoes again
The struggle is real for every Lymphie with lower extremity lymphedema. This is true especially for women since many big box retailers do not carry wide width shoes for women in stock. You have to roll the dice on-line, or make the jump to the corresponding size in the Men’s section. I bought a set of extra-wide tennis shoes and had to buy the high-top length shoelaces to put on a regular shoe in order to be able to tie them. I had a pair of cheap winter boots that I found at Macy’s for like 50% off clearance with an extra 20% percent off coupon. My measurable goal was to fit in those darn boots. Every week I tried them and tried to pull the zipper up. Every week I got a little closer. Sometimes I would throw the boot against the wall in frustration. It was literally my stress reliever. I just didn’t know it at the time.
Fitting into those boots were the measurable goal and my motivation to exercise in compression. I wanted to fit in them so bad.
What is your measurable goal?
Achievable Goals – Let’s be realistic
While it’s fine and dandy to have goals, they also need to be achievable. I had to have a very frank conversation with my Lymphedema therapist about what I needed to do to achieve my goal of fitting into the boots and my exercise endeavors. She laid it out for me as described in the transformation article. She confirmed it was achievable, if I was dedicated and persistent about managing my Lymphedema. I never dreamed I would be able to run. That came after the shoe goal was achieved.
What is your achievable goal?
Results Oriented Goals – Envision the change, Be the change
Document, document, document. I had plenty of older pictures of my swollen legs, but I lost them when my old phone crashed on a trip. Pictures are worth a thousand words. Nothing like putting up a before and after picture that shows the results of all of your hard work. Keep a diary of your diet, exercise, photograph how your LE limb looks, and what changes exacerbate your swelling. Heck, keep track of the weather and humidity. I used My Fitness Pal and Fitbit to track my fitness goals, along with pictures. Don’t be hard on yourself. Be patient with results. If you fall of the rails, get back on and move on.
What are your results so far?
Timely Goals – Be in it for Life
Again, a very frank conversation with my LE therapist was in order. How long would it be until I could get there? She said it all depended on me and how my body responded to what I was doing. In other words, only time would tell. I would not accept that. I said to myself that I had to be better within a year. That was the original timeframe I had. For my shoe goal, it took six months. My run goal took 11 months.
What is the timeframe for your goal?
You Can Do It, Lymphie!
- What is your first specific goal?
- What is your measurable goal?
- What is your achievable goal?
- What are your results so far?
- What is the timeframe for your goal?
We are so much more than our Lymphedema condition, Lymphies. My next goal involves running a 5k. I had some friends that do them, and I want to join them in that activity. Think about your goals and your plan to Stay Lymphie Strong. Talk it over with your LE therapist and doctor about what might be right for you and do it.