One of the things you learn early on when you are diagnosed with Lipedema is that it is considered a Self Care condition.
It is because the treatments are left up to the patient to arrange, to learn what works (and what doesn't), to fight for coverage (with insurance), to pay for out of pocket when not covered, to continually try new things, and to stay on top of the progression of our symptoms, as best we can.
I still remember being at the CLT (Certified Lymphedema Therapist) office after my MLD (manual lymphatic drainage) treatments were finishing up, and asking what was next, and learning nothing!
CDT (complete decongestive therapy), which included MLD, bandaging, etc., which I had been having done in therapy, had been successful, and after I reached a plateau (no more reduction to my measurements) I was fitted for graduated compression, and basically left on my own, as there were no treatments for Lipedema. Come to find out, even the CDT protocol was a Lymphedema treatment, it was prescribed because I had secondary Lymphedema to my primary Lipedema, so it was beneficial for me to have the CDT treatments.
Since then I have experimented over the years, and found many things that help my symptoms; some help ease the pain, some help to keep my lymphatic fluid moving, etc.
The first thing I found helpful was moving as much as possible, it is what started the journey that would become Lipedema Fitness, and if you have read any of my other posts, or followed me on Instagram or are a member of the Facebook support group, you probably know one of my motto's with regards to fitness is ALL OR SOMETHING!
Which is a way to remind ourselves that every movement matters, every step we take, every effort we take, matters, and helps us to stay strong and mobile. We cannot have an All or Nothing attitude, we need to modify that to All or Something.
Well the same motto holds true for Self Care, too.
Fitness is considered part of Lipedema Self Care treatments, but I cover fitness a lot, so this post is referring to things we can do outside of fitness; Self Care items we have discovered over the years that also help our symptoms.
Some examples include Compression, Cupping, Deep Breathing, Dry Brushing, Massaging, Moisturizing, Pumping, Reiki, Taping, and Vibration. There are also others, but you get the idea.
Self Care can be incredibly TIME CONSUMING, and can be COSTLY. We spend hours (yes hours) every day trying to stay on top of our care, and sometimes it becomes overwhelming.
I've written a post that talks about my typical day
here. It will give you an idea of the time commitment for the treatments I do on a regular basis.
So, how do you know what will work for you? Sadly, you don't until you personally try it. Being in a support group and hearing from others what is working for them can give you some valuable insight, but ultimately you will have to try things out, and see how your body responds.
Once you have some Self Care treatments that you find helpful, you then have to see if you can afford them on a regular basis; not just can you afford them financially, but can you also afford the time it takes to do them, and do you have the ability to physically do them, or have help to do them at home?
I have tried so many things over the years, invested a lot of time, and money, seeing how they work for my own symptoms, but I also try them so I can share with my members/followers, so the information is out there for others to find. Sharing is really helpful, so if you try something please consider sharing your experiences in a group you belong to, or as a comment on someone you follow, etc.
I consider myself experienced in Self Care, although there are so many things out there, something new is always coming up (which is a good thing), but I want to share something with you that is important in being able to Juggle your Self Care...
YOU ARE THE BEST JUDGE OF WHAT WORKS FOR YOU!
I think we need to hear that, a Self Care option might be the bees knees to someone else, it might even be very beneficial to you, but if it doesn't fit into your lifestyle, it is OK to not do it.
It might be out of your budget. It might be physically challenging to do it. It might be too time consuming. It has to work within your lifestyle to become something you can do on a regular basis, there is no reason to feel guilty if it doesn't work for you, for whatever reason.
Over the years I have played around with what I use/do regularly, I look at my ROI (return on investment), do I get enough out of the Self Care treatment, compared to what I put into it?
I find cost is an easy one to let go of, we know if something is out of our budget and we can let it go, or we can try hard to get insurance to possibly cover it, but it becomes a pretty cut and dry decision.
Time on the other hand is harder to me, how do I justify not doing something that might help me? We tend to feel guilty if we are not doing absolutely any and everything to combat Lipedema, and I'm here to say you have to be able to let that go. Emotionally we don't have time for the guilt, we are doing the best we can.
One thing we can do is MODIFY the Self Care item...
Just like in fitness we know MODs are our friends, they let us do things physically we might not be able to do otherwise, and MODs can work equally well with regards to our Self Care items, too. We just need to learn how to apply them.
For example, I was prescribed 30-40 grade graduated compression (that is the strength of the compression), and it was for a full foot legging style. I was fitted and my PT ordered me custom compression (because I did not fit into off the shelf full leg compression). It was really expensive, like almost $1000; and guess what? I hated it. Not just because it was uncomfortable, but because it felt like it was constantly pulling me down, and it messed with my emotions.
We tried everything, even asked the company to modify the garment and turn them into a short and thigh highs. The company made the customizations, free of charge, it is part of what you pay for. But the new garments didn't work either, they just rolled, and slid, and didn't stay put.
It was a long effort to try to make them work, lots of blood, sweat and tears went in to trying to make them work, but they just didn't. So I decided since my most severe swelling was in my lower legs, I would start with knee highs, and I have worn knee highs ever since. Wearing them have helped me to keep my progression at bay, if I would have kept the full leg style I can tell you I would not have worn them, and my progression would have begun immediately.
At first, I beat myself up over that decision, but over the years I have learned to let go of things that I cannot get to work in my lifestyle. I am doing what I can do, and that is enough. I don't do myself any good feeling guilty that I am not able to do more.
When I began training I was concerned that my upper legs would be painful, so I found (from trial and error) that I could easily wear a micro massaging full legging (under my knee highs), and give my upper legs some support, too. I could even squat in these leggings, where I could barely walk in the custom piece I tried initially. Finding that helped me to realize lighter compression and being able to squat did way more for me than wearing higher level compression and not moving much.
I modified my compression. I made it work for my lifestyle. I learned modifying what I was doing was more important than being miserable in the prescribed compression. And isn't that what MODs are all about, finding ways to make it work?
I consider that a MOD to the treatment itself.
Another example of modifying a treatment would be using a hand-held percussion massager. I started using them to try to break up fibrotic tissue, but some of them can be too powerful, too painful on Lipedema tissue, so I experimented with different massagers, and also how I use them.
You can adjust the power, and change the attachment, but I also found if I adjust the angle I'm hitting the tissue at, I can tolerate the treatment better; again I Modified the treatment itself. Now I am able to add this into my regular Self Care routine, because I found a massager and a method at using it that is not too painful, and I am able to see some real results in how my legs feel.
Another way we can make a Self Care treatment work for us is to Modify the time it takes; maybe something takes too long to fit into your busy schedule, well, why not shorten the duration to something you can easily manage?
Don't beat yourself up that you can only spend five minutes (instead of 30) on a treatment. If it works and helps, and you can easily add it to your day, you will use it regularly and see results, vs. not doing it at all because it takes too long, and you are already maxed out and stretched too thin.
An example of that would be Dry Brushing, you can really take your time and spend 15-20 minutes brushing your entire body, then hoping in the shower (which is how they suggest we do the treatment), or you can adjust that; maybe you only have 5 minutes to spare, then do 5 minutes. Maybe rotate the areas you focus on, switching up each time. However it works for you is the best way to do it.
Another time saver I just confirmed is another Modification option, which is HUGE in my book; it involves my pump; I am currently working with Medical Solutions Supplier and trying out the Optimal Plus; like other pumps the set treatment takes 60 minutes.
Before trying this machine, I had another pump that also had a 60 minute set time, but it only did one leg at a time, so 60 minutes for the left leg, and 60 minutes for the right leg (plus the time to get in and out of the pump). It was so overwhelming, and so time consuming, that I rarely found time to use it. It was a great treatment, one that comes highly recommended, but it just was too much for me to use on a regular basis.
The Optimal Plus I am using does both legs at once (already cutting the time requirement in half); but still I don't have an hour every day (the suggested treatment is 2-3 treatments a day for those that are less mobile, and at least once per day for those who are more mobile).
During a session last week it struck me, I wondered if I could adjust the duration, like I can adjust the compression strength? I reached out to my contact and asked, and guess what, you can!
They still suggest the full hour per day, but said it could be done 30 minutes in the morning and 30 minutes at night. Which might make the treatment something I could do more frequently, or even add an extra half session, where time permits.
So to sum up this rather long post, you can modify your self care treatments to make them work for you and your lifestyle. You should not feel guilty about doing so, either. You should feel empowered, you are learning so much about your condition, and your body, further proving you are your own best resource, so trust you!
