From the time my alarm clock goes off in the morning to the moment I shut my eyes at night, I am constantly reminded that I have lymphedema in my legs. When my bare feet touch the plush rug on my bedroom floor and I sleepily stagger to the bathroom to brush my teeth, I savor every step. I think to myself, “God, this feels good.” Spreading my toes a little wider as I stride back across the hard wood floor in the hallway, I try to push out of my mind the thought that within minutes I will once again be encased from my toes up to my waist in compression stockings. My iron legs, as I call them.
It’s the little things that slap me with the “lymphedema reality check” throughout the day. Getting caught in an office conversation that’s taking a little longer than my legs can stand and wondering how I can gracefully find a chair to sit in. Pulling my stockings up in the bathroom and smoothing out the compression using rubber gloves, embarrassed that the ladies in the stalls next to me can hear the strange noises I’m making. Catching myself gazing a little too long at another woman’s bare feet in a pair of sandals and longing to have just one day that I can walk around and feel the air on my naked legs and feet.
But there is one place I can go, at least for a little while, where I feel normal – and that is in the swimming pool. The water surrounding my limbs provides natural compression. No stockings required. I can slip into a lap lane next to a perfectly healthy person and swim just as long and stand just as long – sometimes longer.
The sensation is so intoxicating that I wake up at 5:30 a.m. to get to the gym, because that is the only time I can fit it into my schedule. I’m in the pool by 6:30 a.m., finish my workout by 7:00 a.m. and am at work by 9:00 a.m. Sure, the exercise is good for me. It helps keep my weight down and my lymphatic fluid flowing without any strain on my joints. But I’m counting more than calories, I’m counting minutes of freedom. The only other time I feel this liberated is in my dreams at night. While I sleep, I never have lymphedema. My legs are always bare, healthy and normal.
Access to a swimming pool and establishing a swimming routine is not easy or easily affordable, I know. It took me nearly 15 years to figure out a good situation. But I finally did it. And so can you. Swim. Swim not only because it helps your lymphedema, but because – for a brief time – it makes you forget you have it.
Lymphedema Diary 
Thanks Britta, I feel the exact same way. I never like swimming all that much. But now that I have lymphedema, it’s the only time I do not have to wear anything. I am learned to embrace my inner mermaid and I look forward to swimming. Everyone should give it some thought. it’s good for the body and the mind.
I love my time at the pool too … It is such a feeling of freedom… And it helps the LE too… 😃😃
I have always been told that it is important to wear a stocking when exercising and I always do when swimming. I wear a compression velco night appliance so the only time my leg is bare is in the shower. There is so much conflicting information on lymphedema!!
Reblogged this on My Lymph Node Transplant and commented:
Thank you for showing how great and important swimming can be when you have Lymphoedema… I am not a good swimmer but I walk up and down or join a water aerobics class… Reblogging … Thanks
Walking up and down is more difficult and takes more concentration than regular strokes. Good for you, Helen.
Barbara – good point about it being good for the mind. And then I feel better able to deal with the body – at least for the rest of the morning!
I have been swimming with my stockings on (I am retired). Do you think it’s better for my legs to go bare?
Hello Tookats – I can’t imagine that the stockings are doing anything for you but weighing you down under water. You are not the first person I have heard of that does this, but try it without. Give your skin any opportunity it can get to breathe!
I have LE in one leg and I am constantly working on this one leg– either the jobst compression stocking half panty that I wear to work every day, or the bio compression pump (with 8 chambers) for the left leg every night for an hour, or the thick quilted green long boot I wear to bed at night–it’s endless–I do go for run/walks with just a Backcountry CWX compression tight-and the swim does feel wonderful-it really is freedom-I also look at peoples’ feet and knees and wish I could wear the things I used to wear; like skirts. I can’t allow myself to throw out any items (like shoes) because I still hope that one day my left leg will be close to the size of the right one–right now my left leg is about 1 1/2 inches bigger in the thigh than the right leg and 1 1/2 inches bigger in the calf and ankle. Swimming is a great feeling-I saw the swimming video for LE on u-tube and I started doing the sideway exercises for the legs–I’m hoping that Dr. Chang from the University of Chicago medical center will be able to get my left leg to being closer to the measurements of the right leg..I pray for inner strength for all of us.
By the way, Tookats, congratulations on being retired. I hope you get to swim every day.
The water acts as a natural compression and the freedom you feel is wonderful…
I just found your blog! Your story is similar to mine… I have primary leg lymphedema and was diagnosed about 20 years ago around age 18 after a long day walking around Disneyland. I have never heard anyone say the thing about realizing you’ve been standing talking too long and start looking for a place to sit down!! That kind of thing happens quite often and it’s just nice to know another person experiences it. Also the looking longingly at women who wear open-toed shoes. 🙂 Thanks for blogging!
Welcome, Jackie! So glad you found me. I’m curious – how DID you stumble on the blog anyway? I just started blogging last month so I’m new to this. Very interesting to know you have experienced the same things. Makes me feel a little less crazy for putting it out there. Are you on Facebook or Twitter? Follow Lymphedema Diary there too. The social media community is quite active. https://www.facebook.com/lymphedemadiary
@lymphedemadiary
My daughter gets married at the end of the month and what shoes to wear has been a real problem!!! Plus yes I relate totally to the needing to sit down !!
Thank you for sharing! Well said, your words were my words! I too love the pool!
Hello Britta, you have captured the feeling so well! I have gone to our local YMCA to swim for the same reasons, knowing that it would help my leg, as though I had had a lymphatic massage. I only go for the hot summer months. Your comments about wrestling behind the curtain in the changing room was right on! I can imagine the others saying, “what IS she doing in there?” I hate the part when you have to pass the full length mirror, in your bathing suit, to get to the pool. Once I slip into the water, I feel as though I have dropped between sheets of cool silk, and I begin the laps to and fro forgetting about my leg. Swimming allows you to work your muscles with no fear of overloading.
Thank you for expressing so honestly. It’s so refreshing to be able to share with a community of people who really understand what it feels like.
Excellent point about not overloading, Jennifer. I used to lift light weights and do other exercise machines, but there was always a fear that I was going to do something to hurt myself. Who needs that on top of everything else?!
What a wonderful post! I so understand that feeling of putting my feet down in the morning before the stockings go on. But every professional I’ve ever seen has said you can’t do that–that you have to put them on while you’re still in bed. That would mean my shower at night instead of the morning, and I’m not ready to do that.
What if I wake up in the middle of the night and have to go the bathroom? Would the “professionals” say I have to real quick put on my stockings? lol. I’m sure I push my legs more than I should, but we gotta live too or it really doesn’t matter how well we’ve taken care of ourselves.
Ewingo2013 – Thank you for sharing your circumstances and struggle. 1 1/2 inches is a lot of fluid. Can you please share the link to the utube video you mentioned?
That’s so true. And the professionals don’t really understand exactly how to negotiate a life with LE. On a related topic, have you ever read or heard anything about what happens when a professional recommends wearing two compression garments, one over the top of the other? I am pretty sure it caused a tumor in my foot. I am wondering if you’ve ever heard of that.
I had a therapist recommend layering compression and it flared up my neuropathy – very hard on the toes also! don’t think layering works well on the lower but I do layer the compression biker shorts for my thigh area when I have my bandages to the knee at nite.
Thanks so much sharing your experiences and I am so with you!! The best hour of my day is the one in the pool and I hate to miss a day – took me many years to find the right one (a private club house for a condo that allows outside memberships) and have made many friends there where many use it for health related issues. can be having the worst day and in lots of pain but when I slid into the water, my whole body does a sigh and says ” thank you”
Many times have looked at people getting out of pool and quickly running out to leave while my process putting everything back on takes a half hour – have gotten stares when I pull out the rubber gloves but have also educated many on the disease so that is a plus.
stay strong!
Jeanne
Hi, I have just come across your blog and this post has really opened my eyes and if I am honest made my heart hurt a little. I am so glad that swimming gives you the freedom you crave.I can only imagine how you feel…and that is so difficult as my little girl (who turns 2 next month) was born with primary lymphoedema so I have no clue how she really feels yet. So this blog has really helped.I take her swimming once a week and I am so glad after reading this. She absolutely loves it and I hope that she feels free like you do in the water. I am starting a blog about our lives so if you don’t mind I can send you a link when I am up and running? Look forward to reading your other posts.
Good for you starting a blog and making your voice and your little girl’s voice heard. We are a growing chorus. Please do share the link with me. Join the conversation on facebook and twitter too. A mother’s unconditional love and support is the most effective treatment yet in coping with lymphedema.
Thank you, my husband and I are very lucky to have her and her big brother to love. I am actually deleting the site I am currently using here to comment as my non-computer head wasn’t getting too far with it! I am getting help with my new one, hopefully it will be running this week and I will share the link. Thank you.
wow, I stumbled through this blog as I’m researching for different types of Lymphedema for a class project and I am so glad I did! I have Lymphedema on my legs as well and I can relate so much with you, and the stocking situation is a pain in the ass, so I feel you there 100%. I think only people with Lymphedema can relate and know how irritating it is to be constantly adjusting and fixing your stockings. I try to do it in private but when I am around family members and friends I do right there. 🙂 I have just recently heard about water therapy for lymphedema and am excited to try it out and reading this and how much you love it just makes me more excited. so thank you for posting this…I will safe this link and come back for more, please keep posting. another thing that I think that you have encouraged me on doing is creating a blog about my lymphedema, I have though about it for years and years but always talk myself out of it. But I think I am going to start one because I want to raise more awareness about it, and I want to connect with people that have it as well.
so again thank you for taking time out of your day and writing this post, I don’t feel alone in this sea of normal and average. I have a lot of the same feels as you do.
have a wonderful day,
Thank you so much for commenting, Gabriela. Can you tell me what kind of stockings you wear? I’m always curious about brand, type and how much compression other people wear. I’ve been trying out Juzo’s Soft line (30-40 compression), but I find durability to be an issue. It seems that proper fitting is an issue with you!
i have been dealing with primary lymphedema in one lower leg for over 50 years. I believe swimming has been what’s saved me. When I was diagnosed at age 12, i took all the swim classes the Y had to offer. Later I worked with coaches on improving my stroke so I could really enjoy fast, efficient swimming, and made sure I swam for an hour as many days as possible. And as I got older, even though I was not interested in competition, I would work out with a swim team. (Most cities have Masters Swim Teams any adult, no matter how old, can join and not have to compete.) I am certain swimming is what allowed me to stay active and kept the leg and foot in pretty good condition, despite having had a number of bouts with cellulitis over the years, and being overweight (extra pounds aggravate leg/foot edema).
I would strongly encourage anyone with lymphedema to become an efficient swimmer – once you know how, you never lose the ability. it’s an incredibly pleasurable form of exercise, you can vary your stroke and the intensity of your workout, and you can keep on swimming even when you can’t walk. and, by the way, I’m not the only old,fat person working out in the pool.
Jill, you have inspired me to get back in the water tomorrow morning. I admit, I have slacked during the last couple of months with the sub-zero temps outside and dark mornings. Thank you, Jill, for sharing your story. How often do you swim and for how long?
I have periods of time when I swim 3-4 times a week (lake swimming in the summer as much as possible) and then go through times when i don’t swim at all due to illness or laziness. when i get back to it I am always amazed at how positively it effects me, and regret not sticking to it…the super cold winters certainly don’t inspire me. next winter I must get out of Michigan for awhile so I can swim outside in the sun. When I swim indoors I usually do a mile, which takes under an hour. when open swimming (mostly in Lake Michigan), I’m up to 2 miles by mid-summer. thank you for your blog-I’ve never know anyone else who has primary lymphedema and am thrilled to find you and the Lymphatic Network online.
If you have trouble finding a pool (heated, indoor, etc.) that you can use try any nearby hotels. With a letter of need from your doctor many hotel chains will allow you to use their pool. Sometimes there are communities that the nearby hotels are the only available pool.
Great suggestion, Nancy!! I’m sharing it on Facebook tomorrow morning!