Wednesday, 10 July 2013

Guinea pig


The week before last week I was a guinea pig for future Lymphedema therapists in training. It went well and they were all very sweet. Upon arrival I had a chat with the teacher, a Lymphedema therapist from a clinic in Germany, so she knew a little about me and my Lymphedema. Then I undressed and the students had the opportunity to look at my leg and ask questions. Then they took turns touching my legs, feeling the difference between the good and the bad leg and they had a go at manual lymphatic drainage (MLD). They were very gentle with me and often asking me if I was OK. Finally the teacher did a quick bandaging demo on me.
As a thank you I got the beautiful bunch of flowers on the picture, I thought that was a nice gesture.

You would think it would be slightly intimidating to lie only in your underwear and being looked at and groped by 15 strangers but it wasn’t. I felt completely at ease. Afterall they were physiotherapists and accustomed to dealing with people in a warm, non-judging and understanding way. That's what's so great about professionals working with hands-on treatment. They like people and are not repelled by abnormalities. They are aware of the person inside.

At the Q&A session with the therapists one of them said something like "so you don't have any major inconveniences of it?". I was a bit taken aback by that one. Having Lymphedema is for me one huge problem. However, I don't have pain, restlessness or a feeling of heaviness like many others and I have also only had Cellulitis that one time last year. I heard myself saying "no, it's mostly minor things." I guess it is but it doesn't feel so. For me it is a sorrow that I can't wear a short summer dress, sandals, smart long boots. That I can't just go swimming in the sea. That I must be careful not to get Cellulitis. That I have to buy two pairs of shoes each time and they still don't fit. That something happened to my body so that it now looks different and I can't do anything about it. That I feel like an elephant. Compared to lifethreatening diseases I am whining over nothing. No one can see that I have Lymphedema, at least not from a first glance. (And no one can see what a job it is to create the illusion that nothing is wrong...). Perhaps this was a reminder to once again try to turn down the selfpity and look at all the things I still can and maybe even explore new possibilities (now with valuable learning curves - and antibiotics - in my pack...).

I hope you all are well. Tomorrow I am going on a little trip with my parents to the western part of my country, just for a couple of days. It's been nearly 30 years since I was in that area so it's going to be good. I am also looking forward to spend some time with Mum and Dad.

I lost my job through more than 11 years. My workplace is closing down and from early August I will be looking for new opportunities, as they say. I do hope I will find something soon but I doubt it. Hard times in many professions including mine (graphic design). I guess it was about time for a change. One that I couldn't get around to make myself but now it has come for me.

14 comments:

  1. Hello!
    I've been meaning to come back here and comment for ages. Sorry it's taken me so long. I do read you even if not commenting.
    Love what you've said in this post - I am going to share it with a couple of non-lymphie friends as it is exactly how I feel as well (except I can manage with only one pair of shoes).

    I have to admit things have been a bit depressing legwise (maybe that's why I couldn't bring myself to comment)- I just can't keep it under control and we can't figure out what I'm doing wrong. I just got a new batch of stockings and I am trying a class 3 for the first time, plus I now have some knee-highs to wear over my class 2 stockings. Just what you want in summer, eh? Still, if it helps I'll do it.
    At the end of August I have 3 weeks of daily MLD and bandaging and will be off work for it so that should help in the short term at least. but this will be the third time I've had this intensive treatment so I know that although it has great results, all the lymph runs back in pretty quickly as soon as the daily treatment stops.

    Sorry to hear about your work situation. On a more positive note, I was made redundant some years ago and it was the best thing that has happened to me, although obviously stressful and scary at the time. It provided the push to make me figure out what I really wanted and go for it. I hope something works out for you. What kind of design work do you do? I work in a publishing/communications role so that's yet another thing we have in common maybe!

    Have a lovely time with your parents.
    Now I'm here I have to go back over your older posts...

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    1. Hi Hutch,
      thanks for sharing it with non-lymphies :-) Even though I am sad that you too have to deal with it I am comforted knowing that I am not the only one who feels this way.

      I am so sorry to hear your leg is getting worse! It is such a mysterious condition, we can't know what the future holds for our affected limbs. You may not be doing anything wrong, it may "just" be going its own ways. I sometimes wonder if even tiny little things that we don't think can be important, can cause a difference, ie foods that no one would have thought could do any harm, or new laundry detergent or who knows what else. Also, I think many lymphers swell more in Summer with the heat and humidity. Also, I think that it can take a very long time before the leg have settled down and decided how big it is going to be, adjusting to the new situation that came to be when the Lymphedema started.
      Wow, you are doing three weeks of bandaging, that will surely produce good results! I am going for two weeks, probably in October. It is a good idea to take time off for it, it is quite a hassle to get around with all the layers and all. I am so with you on the fact that after the intensive treatment the leg is soon back to what it was before. I discussed it with my therapist and we talked about me going more frequently for MLD and bandaging, perhaps three days in a row every month or every other month. I am also thinking about getting back into bandaging at home for the night sometimes, perhaps every other week or so.
      Thank you for your words of support on my jobsituation. I guess I really did need a good kick in the bum and it is indeed a chance to figure out what I want to do if I will have to do something else. I work as a Desktop Publisher and I do the layout, typography, retouching etc. and hands it to the printery when finished. We are in related professions :-)
      Liz

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  2. Hi, great post though sorry to hear about your job. I assume that if they make you redundant they have to give you a lump of cash? Hope that gives you a breather to explore new possibilities and, as the above poster says, you never know - it may be a blessing in disguise.

    Yes, one of the things about lymphedema IS that in many ways, it doesn't seem like a big deal. But it is little things in life that make it fun - and to not have THE OPTION of wearing short summer dresses, sandals, walking barefoot, not just running into the sea barefoot - this is big, if you actually face it. Something that has changed our bodies and, for those of us with primary, without any other health condition before it. That insurance won't cover payments for the massage and the stockings because we're primary.

    And yes, "the effort it takes to create the illusion that nothing is wrong." That's great. Pretending it's nothing when actually, there's a lot of maintenance and constant checks required, especially in the summer when we have highs of 35 EVERY DAY. Though I'm not freaking out about things the way I was last year, which was my first summer with my stocking and full knowledge I had lymphedema, there's still the tired feeling of having to be aware of my body in a different way and checking each day to see if that itchy place is just a rash from the heat, or if that crack on my foot might be a sign of athlete's foot (if that's TMI, sorry). I go on the train every day and am so jealous of all the woman in their light sandals and men in flip-flops (thong sandals) at the stores at night. I was in the US and wanted to walk barefoot on my mother's wonderful thick yard the way she was doing....sigh....And knowing that I should be doing self-massage every day but wanting to have a normal life too...

    That I'm switching to a new job next week that I've done in the past, pre-lymphedema, and know is very physically demanding at times. That I have to worry if my leg will affect what I can do - and whether this will give the company reason to fire me. Small inconveniences, yes, BUT...

    At the same time, there's things I'm just saying 'screw it' about. I wear short summer dresses with the stocking and if people think that looks weird, it's THEIR problem, not mine. If I'm just going around the neighborhood I'll wear sandals, with a sock on the lymphedema foot. (Hey, ONE leg is very happy with this). Now, if I can figure a way to get back to travelling in Southeast Asia....

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    1. Hi Elaine, thanks for this :-)
      I too am so jealous when I see women in feminine sandals and shoes and dresses. Makes me feel like a hippo.
      I know what you mean about wanting to walk in your moms yard- how I would love to carefree walk barefoot on my parents lawn again, feeling the soft grass under my feet. Or how about the sand on the beach...
      I can't be bothered to do massage or even pump anymore. I am not doing anything, exept for wearing my gear and staying fit - which I would do anyway. However, I am planning to have a go at aqua-yoga, I had a tip that it should be really good for lymphedema patients. Also thinking about getting the trampoline out again.
      You are so cool for showing your leg and saying screw it. I feel that it IS my problem when people stare. They don't care but I am the one left feeling like a freak...
      Tomorrow is my first days as an unemployed. Yes, I will get some unemployment benefits so that's good. I wish you luck on your new job, fingers crossed that your leg will not make trouble because of it!
      Liz

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  3. I guess it's not hard for me to ignore possible stares because I'm always being stared at as a non-Japanese in Japan! Plus I'll admit I'm pretty lucky - the lower half of my leg isn't that noticeably bigger than the other if you don't know to look for it.

    The massage does make me feel better but again, it takes time and if all my free life is taken up with lymphedema stuff, that's not much of a life, is it? I work 10 hours a day and two hours' commuting!

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    1. Hi Elaine,
      it is true, the Lymphedema stuff can take a lot of time and I know you do a lot, which I guess is why you can keep your leg down so much that the bad one is not noticeably bigger than the good. I don't really do much anymore and it shows.
      You are right, Lymphedema is part of our lives but it is not our whole life. We must enjoy life while we can and not let our condition take up all our free time. You sure have some long days, hopefully you can chill out a little on the train back and forth.
      Liz

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  4. Actually I think it's just plain luck - I haven't been doing much self-massage or night wrapping either. It's a bit bigger after this hot summer and my new job, which involves a lot more sitting. (And no, I can't chill on the train; usually I stand for the entire trip.)

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    1. Hi Elaine, sorry you can't chill on the train, commuter trains are packed overhere too. I hope your leg is smaller now that winter has arrived.
      Liz

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  5. I think the leg is just pure luck; I haven't been doing much massage or night wrapping either. It is a bit bigger after this very hot summer and my new job, which involves a lot more sitting. I'm going to Bali for vacation next week and will be doing some scuba diving, which in the past has actually helped my leg a bit - wet suits are like a full-body stocking, and the water pressure is great.

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    1. Hi Elaine, Bali - wow! I hope you had a wonderful time. yes, the water pressure is great for Lymphedema limbs and many seems to benefit from aqua yoga or other water exercise. I am looking forward to spring where the patient association is having their annual patient weekend - this time at a nice hotel with indoor pool, yay!
      Liz
      Liz

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  6. Hello Lymphedema Girl,
    I was doing research on Lymphedema like I usually do praying for a website that says their's an overnight 100% cure through a pill. Sadly I did not find that website but I did find your blog and found it very comforting ( something rare with us ladies of lymphedema). I have had it since 2006 and it's getting worse. I'm in my mid thirties, live in the USA and like you I mourn the loss of ever wearing anything that's not full leg. I just wanted to say thanks for your wonderful blog with real insight and information and just saying it how it is. Here's hoping to a cure one day soon!
    Maryann

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    1. Dear Maryann, thanks for writing, I am glad you found my blog! How wonderful it would be with a magic pill making it go away! I am sad that your Lymphedema is getting worse. I hope you get the treatment you need and that you will be able to keep it at bay. This is such a mysterious condition and we never know what the future will be like. My good leg has showed signs for a couple of years now with swelling around the ankle but it seems to stay that way. Who knows what will happen.
      Warm regards
      Liz

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  7. Hey there - this paticular blog post came to my mind this AM. I don't even have lymphedema (however you better believe I try to wear compression stockings now and then and while on flights!) but, as you know, my mom has a very difficult case...."so you don't have any major inconveniences of it?" Perhaps they meant something like, "so, it isn't the very worst thing in the world? Like, on a scale of 1 - 10, with 1 being 'no complications at all' and 10 being, oh, I don't know, 'shot in the face.'" It just goes to show how great the gap is between the people who have it, who know about it, and the indivuals who are just beginning to understand the ramifications of lymphedema. Thank you for being part of their education and helping close that gap.

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    1. Hi Christina, good to hear from you! Yes, you are spot on, I think that is what they meant and you are right about the gap between those who is familiar with it first hand and those who aren't. Family and friends seemed to think the same - what's the big deal and it may not look like a big deal having to wear a compression stocking but it is, and especially all that comes with it.
      I hope your Mom is doing OK and you too.
      Take care
      Liz

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