Wednesday, 27 June 2012

Working around it

In my last post I said that I had somewhat accepted having Lymphedema and the routines I have now is for life. But there is more to it than that. I guess I relatively quickly accepted it within myself, although I still tried to cure myself, but when it comes to others it is a different matter. I still feel ashamed and I do everything I can to hide my foot and leg. It sometimes feels a bit surreal as it is not like I have committed a crime or anything and I shouldn't really feel ashamed but I do. However, I feel that I am getting better at working around it.
Over dinner at the first night at the patient weekend earlier this year I talked to Sophisticated Tina and I told her I was ashamed. I think she was telling me that in the Summer she would go swimming in the sea with her little daughter, wearing an old stocking and I said I could never do that. She asked me how long I had had Lymphedema and when I said "almost three years" she said "oh, you are not there yet", meaning that she was way ahead in the process of accepting it/not fussing so much and that I would get there too one day. Her words comforted me but I still find it hard to believe I will ever get to show my stocking. Who knows... If only people weren't so judgemental and if only I wasn't such a sensitive wuss ;-)

On Friday I went to the personal shopper again, stay tuned for more about this. It wasn't as mindblowing as the first time but I did get a couple of nice things of which I have to decide what to return and what to keep. Definitely one keeper, a beautyful long dress that can be dressed up or dressed down according to the occasion.

I have decided to wear the knee-high everyday at work this week, over the thigh-high, to see if it makes any difference. I doubt it as it is fairly loose, but we will see. I am going to see the fitter next month so can discuss matters with him and perhaps order a better one.

I thought I'd share that the sale is on at where they sell very wide fit shoes.

Sorry about the koala bear, he's got nothing to do in this post but when when looking for a suitable picture in my archive I stumbled upon him and thought he was so cute. He is from this post about my Top 2 Australian songs.


  1. HI Elizabeth, I feel so bad that you are ashamed of your leg; I was ashamed until I was finally diagnosed with lymphedema. I had a misdiagnosis for a year and my leg got in really ugly shape. My husband made jokes about it and I felt really ugly. Once a man was flirting with me and my husband told me to show him my leg; that would stop it. Isn't that mean?

    Do you wrap your leg every night to sleep? My therapist says I should because I am wasting half a day of therapy by not doing it but it feels so nice to be unencumbered and comfortable.

    No one I've told has been judgmental or unaccepting. My friends at work invite me to sit by the pool with them and not worry about how I look. Do you have good friends to support you?

    Thank you for your posts. I enjoy them very much.


    1. Hi Wendy,
      I can't believe you husband said that! It was indeed mean, and I feel angry and sad about it!
      I don't wrap my leg much at night as it is so much work to do it. I am waiting for a new "jacket" for my pull-on nightgarment, hopefully I will see some results when I eventually get the right size. Wrapping is efficient and I should do it but I can't overcome it every night. Like you I cherish the feeling of not having anything on.

      I think you are amazing for being so open about your Lymphedema. You are lucky to have such fine colleagues and friends. My friends are allright but I still don't feel like showing my leg. It is more with people I see now and then who are not friends as such, more like aquaintances. Perhaps over times things will change for me.

      Thanks for reading and for writing – and for your support, much appreciated :-)

  2. My issues are still trying to work the lymphedema into my life and get over the fear of getting cellulitis again - but by Tina's evaluation, I'm barely a year post-diagnosis so I may have a LONG way to go. I think everybody does it all at their own speed and I admire you for all the physical things you're doing. That's my goal!

    I don't mind showing the stocking so much - in fact, today I'm wearing an above-the-knee summer dress. Perhaps nobody comments because I'm in Japan and people never comment on anything here, espcially if you're a foreigner - they think you're going to act weird anyways. (So I figure maybe I should give 'em what they expect!) I think part of it is that I've gotten used to standing out here as a racial minority and just shrug differences off. People are going to stare at me because I'm blonde and speak Japanese, so what's a stocking add to it??

    Nobody's any braver or wussier but just at different places in the journey.

    1. Hi Elaine,
      Lymphedema sure is a journey and I do feel I am at a different place than say two years ago, but like you I still have a long way to go. I guess humans were designed to adjust, and so we do.
      I think you are brave for not fussing about showing the stocking. Wow, above knee summer dress! Perhaps you are right about the gaijin factor ;-)

  3. Oh, and Wendy - my therapist told me I should wrap on nights when my leg seems bigger than usual. I agree with you that it's nice to feel free, so I probably don't do it as much as I should! Though it is six-seven hours where I'm not aware of it at all so what does it matter really...but as we all know, it does.

    It's so wonderful to be able to talk about these things with people who understand!

  4. I was reading all the comments and it got me thinking… in my case, I don’t think I have totally accepted it (I have foot lymphedema on my left foot for more than a year now) but I'm not hiding it either, when people see me and ask why I have my food wrapped I do tell them why, I think it helps to spread the message. I see so many people on the streets (specially now during summer) with swollen feet and I feel like I want everybody to know about lymphedema, because they should be doing something about it before it gets worst, I’m still building up the courage to stop them and ask if they know what they have. This horrible disease is misdiagnose more that often, usually doctors just blame the hot weather (that is what mine told me the first time) I wish people could find out what they have while it's still early. This doesn’t mean that I stop crying once in a while, it usualy happens when I struggle with my shoes, but I’m getting better at accepting and not hiding that much ans like Elaine said earlier, being different is not bad, it make you unique ;)
    So yeah my motto is that is good for people to know, the more the better, there is nothing to be ashamed, specially someone like you a great person that put up this blog not only to help you but to help others learn from you and share stories.

    There is a bright side to this, I have gotten more new shoes and summer boots. I use the same size on both (half size bigger than I used to) but I put insoles on the right one, the good skinny foot.

    Keep your good spirits up, I always look forward to your adventures!

    Oh I almost forgot… today I’m going to my first kinesio taping session, not sure if it’s going to help, but want to give it a try, I’ll let you know if it makes a difference.

    All the best!

    1. I was thinking some of the same things, that it might be good to spread the word about lymphedema if people ask. Even here I see some people I think must have it and I want to ask them what, if anything, they're doing...

    2. Hi Nathalie, thanks for writing, and thank you so much for your kind words to me.
      I agree that people should know and that there is so many out there who doesn't know what they have and thus don't get treatment. I think you are brave for showing your foot and telling people about it when they ask let alone approaching a possible Lymphedema sufferer to explain what they have - when you have built up the courage ;-) You are a pioneer :-)

      One day every year my patient association sets up a stall in a busy shopping mall and hand out leaflets, demonstrate pumps, wraps, stockings etc. Actually quite a few people stop by and check it out.
      I am sad that you sometimes cry over your situation but I know what it's like. It takes time to adjust to the new situation and to a bodypart that we have known always not looking and acting like it used to.
      It's great that you now have more summer shoes! I am experiencing a great deal of relief after realizing that different sizes is what I need to do. Finding out what works is wonderful.
      Exciting with the kinesio taping, do keep us posted on how you go!

  5. A totally different take on acceptance. I thought I was at an okay place with it all, but today I was having a massage and talking to my therapist about long-term plans. She said the ideal is to make the leg ever smaller and that before I get my next stocking (Octoberish) I should wrap for a month or two 24/7 to make the leg still smaller...She was also recommending that I have a full-leg panty-hose type stocking, with 8 cm (4 inches) down the thigh of my good leg...

    Both of these suggestions depressed me a lot. I hate pantyhose and never wear them if I can help it (one reason I adopted long skirts long BL (Before Lymphedema). But wrapping for two months would mean I've spent five months of this year wrapping. I know maybe this means I don't have to do it in the future, but where does it end? Wrapping means restricted movement and also it hurt a lot for me. That doesn't seem like a life...I don't mind wrapping at night so much, but the 24/7 stuff was very hard.

    Would LOVE to hear people's experience. I did get good results with the first round of wrapping so if another would really set me up well, I suppose I should do it. But where do you end? How long do you do this?

    Also, for people with full-leg lymphedema, what sort of stockings do you wear and why? I really need to put everything together to decide how much I want to do, and when - and it'd be great to know what other people are doing. My therapist said that "nobody else of my patients uses only a full-leg stocking, they all wear pantyhose type" but Japanese women wear pantyhose a lot more than people in the West. Also, there tends to be a prejudice here to thin, thin legs even among "normal" people - so sometimes I wonder if my advice is being colored by Japanese ideas.

    Sorry for hijacking this thread but I've really enjoyed hearing everybody's thoughts on other things and this would really help me out.

    1. Hi Elaine.
      I totally get you are feeling down about the prospects of months of wrapping. Once a year I have a big session before being measured for new stockings, but only for a couple of weeks top. Two months sounds very drastic, I think. At the hospital where I recieved treatment (or so they called it...) in the beginning I was wrapped for six continious weeks with Coban bandages (sticky, smelly stuff) and it was way too much, my current therapist was mortified when I told her. My knee was swollen and my leg was sore from not being able to bend for so long. I think the skin, the muscles and everything needs a break after every few days of wrapping. At the end of the day it is your decision and you can say to your PT that you only want say three weeks or whatever you prefer. Three weeks would help a lot too. I have made appointments for eight days in September, already dreading it. I think this is what it is going to be like for me, one big session per year and then the odd MLD now and then. Plus self-treatment at home, of course.

      I guess it is all about finding a balance. Like we discussed recently, what's the use of a slim leg if achieving it makes us miserable? We must weigh up the pros and cons. In the end it is our decision, not the therapists.

      I use a grade 3 thigh-high stocking by Medi. Very thick and stiff, but very efficient.