Saturday, 18 August 2012

My routines

My Easy-Slide.
Inspired by Elaines comment to this post I thought I'd write something about my routines, hoping that you guys will share yours too so we can learn from each other and perhaps better our situations.

Daily life:
Getting up in the morning I head straight for the shower. I can't go without the stocking for more than a few minutes without the lymphfluid building up. I keep my Lymphedema leg out of the water as good as I can as I feel the water running down acts a little like MLD, just the wrong way. When done I put my foot up on the wall as high as I can and shower the leg from the foot upwards to rinse the soap off. I dry my leg downwards up and then put on my toecap and compression stocking straight away, sitting in my bed or my sofa. I use an Easy-Slide to put it on. Come nighttime I sometimes take off the stocking when I know I won't be doing anymore that day exept laying on my sofa watching TV. Sometimes I use my compression pump. When it is time for bed I put on my nightgarment and go to sleep.
Every now and then I wrap myself for a few nights if I think the swelling has gone up.
I almost never take off my stocking during the day, only if I for some reason really have to. Like today when I will shower in the afternoon to go to a party tonight.
I pull my stocking up when I go to the bathroom anyway. Sometimes I pull it up in graveyards, see this post... I fold it down to the knee, pull it up and fold it back up.

Once a year:
Once a year I go through a wrapping session at my therapist before measured for new stockings at the fitter. My stockings are guaranteed to last for a year. I am usually wrapped for about ten days. I know that some patients are wrapped for much longer than this, I guess it is individually. After about ten days my leg has gone down as much as it is going to, which is close to the size of the good leg so it doesn't make sense to wrap further. My therapist gives me MLD and wraps my whole leg in the mornings and I wear it until next morning where she removes it and repeats the procedure. After my last session I got this bandage that I use when I wrap myself and that my therapist will be using at my next session, which is next month. During weekends I wrap for the night as good as I can. I use a castprotector when showering, and I wear my old trekkingsandals and some very baggy trousers during the day. After the ten days my fitter measures my leg and orders one new stocking. He gets them from Medi in Germany and it usually takes 10-14 days but can be done in as little as five days as a rush order. After a few weeks with the new stocking, testing that it is OK, he orders one more. The stockings are guaranteed to last for a year.

Apart from the big session described above I have MLD perhaps four times a year, just for an hour. I'd like to have it more often, say once a month or more.

What are your routines? How long are you wrapped for at the therapist? What kind of stocking do you use?

Tonight I am going to a friends 40st Birthday and I am going to wear the new, dark blue dress. The first time. I picked it up from the taylor the other day, it had to be shortened and the jersey fabric was too "alive" for me to mess with. Usually I do these things myself, but couldn't risk ruining the beautyful dress. I am looking forward to wearing it. Tomorrow I am going to my nephews 12th Birthday and I will be wearing the floral dress below. I got that from Asos last year or the year before. It will be perfect for tomorrow, a hot and sunny summers day. Looking forward to feeling feminine and dressed up.

The dress before it was made shorter. I will wear my white
Converse hi-top sneakers and a big turquise-coloured necklace with it.

Photo from asos.com
Will wear the sneakers again and possibly a little necklace with a red stone.


8 comments:

  1. I wear a thigh-high stocking, grade 2 20-30, guaranteed to last for six months. I'm coming up on my first renewal session at the end of September and my therapist wants me to wrap, but she's being so vague about it I'm a little nervous - I suspect it may be 2 months. This means me wrapping it most days and going to her once every two weeks for MLD. She wants me to be into a full panty=stocking type with half leg and I'm fighting this!

    I get up each day and put on the stocking right before I leave the house. I wear it all day until I shower at night. I also do MLD as many days as I can on myself, for about 20-25 minutes; I've found it helps relieve other stress too. If needed after a long day and I seem to have gone up a bit I'll wrap at night. I've been doing some light wraps over the stockings if I don't go out during the day the last few days because the stockings are getting so old.

    I wrapped for close to three months initially from January to mid-March this year, going for MLD each week. Now I'm down to every two weeks - we may make it three or so but right now it's summer and very, very hot. This didn't get me down to the level of my good leg but it was a lot smaller - it had gotten big after I had cellulitis and was hunting for a new therapist.

    I've lost a lot of weight this summer due to another issue - about 4 kg, which is a lot for me - and the leg has gotten smaller, but of course this isn't ideal or recommended!

    This is a great idea - I'd especially like suggestions of ways to avoid the panty stocking, since I don't have any abdominal lymphedema.

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    1. Hi Elaine,
      wow, well done doing 20-25 minutes of MLD often!! I think I should do it more often, especially when in bed as I sometimes have a little swelling in the morning above the nightgarment. When I do do MLD I only do it for 5 minutes, not much, really. I think your MLD may very well prevent abdominal MLD. If the drains work the fluid won't get stuck.
      I too sometimes wrap over the stocking when pottering about at home, I find it very effective.

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    2. I figure that this is the price I pay to keep out of a full panty stocking! But I also decided last year to make it as much of a pleasure as I could - so I dim the lights, put on some relaxing music and light some incense that reminds me of my beloved Bali. Last year I even used scented oil on the leg (pre-infection) but was told that was no good so have stopped. Even so, I find that this relaxes me a fair amount all over. Sometimes I combine a bit of meditation/relaxation/mindfulness in at the end.

      Other times I might do it while watching TV! A very different experience but easy to do because you're distracted by something else. Sometimes at these times I might even go for 30 minutes.

      I do an abbreviated massage in the morning just to kick start the lymph. My therapist said that if I can only do three elements of a massage, they should be the deep abdominal breathing and then the gestures of stroking UP both the thigh and the lower leg/calf towards the rest of your body. So I try to do that most mornings if I can. Takes less than five minutes - not sure if it helps or not, but it must. Sometimes I do abdominal breathing while I'm sitting at my desk at work. I figure that it all has to help.

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    3. Hi Elaine, it sounds just lovely with dimmed lights, relaxing music etc., what a great idea to make it a pleasant time, a treat, instead of a chore! I am in the middle of my big annual session now and my therapist mentioned a panty stocking because the area just above the stocking is swollen - arghh!!! Must do everything I can to avoid that. I do suspect the nightgarment to be the bad guy, will discuss it with fitter on Friday.
      I have some deep breathing exercises that I might try soon. My therapist also recommends some deep abd breaths from time to time.

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    4. Sorry to hear you have the dreaded panty stocking looming too! I do extra massage on the upper thigh to try to keep away from that as long as possible. Hope we both manage to avoid it

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  2. I too have a medi class 2 thigh-high. I put it on as soon as I get out of bed (tend to avoid morning showers) and it's on until bed, apart from at the gym when I normally change into an older stocking. I don't have a night garment - what is that and how does it differ from a normal stocking? Oh and I also have toe-caps as my toes also swell.

    The health system here in Sweden allows for two stockings every three months, which sounds pretty generous from what everyone else is saying.

    I try to wrap myself overnight at least once a week but I should do it more often to really see long-term benefits. I usually see a reduction in the morning after unwrapping but it all runs back in by the end of the day. For me the worst part of wrapping is rolling up the bandages afterwards ready for the next time - I don't mind actually wearing them :)

    I go to a therapist every 2-3 weeks for an hour's MLD and once a year I go to a specialist clinic for an intensive programme with MLD daily and wrapping for 2 weeks (last year was 3). They also give little lectures and exercise sessions, although as most patients are elderly and pretty immobile I find that part quite depressing and unhelpful. I am really jealous that after 2 weeks your leg goes down to a normal size! Do you know how big your oedema usually is at the start? Mine this year was 3.6 litres which I've been told is quite big. They are asking me to consider microsurgery but I'm a bit dubious as I gather it's quite a new technique. I am trying to find more studies on it to form my own opinion. I also don't want to pin my hopes on some 'miracle cure' and be disappointed, just as I am coming to terms with the whole situation.

    Um, what else? You haven't mentioned exercise at all. I walk a minimum 5 km most days (6km walk to work) and go to a spin class 2-3 times a week. It's probably psychological but the pumping action of cycling feels like it's really pumping all the lymph round as well. For a while I had a weekly swim as well but my local pool has been shut all summer so I now have to try to get back to the routine of it.

    I haven't been doing any self-massage to speak of, but realise this is quite important. I'm not sure which technique to use though - there are a number of different methods recommended around the internet. I will ask my current daily therapist next week.

    Does anyone here regularly practise yoga? I have a gut feeling that can't hurt and could have a positive effect

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    1. Hi Hutch, thanks for your input! Wow, eight stockings per year - I'm moving to Sweden this instance! The standard here in Copenhagen is to per year but it varies from municipality to municipality.
      I know there are bandagerollers around, will try to dig out the info I have and post it. I usually roll when watching TV :-)
      I think there was some wishful thinking going on when I said my leg would go down to normal size after two weeks of bandaging. It was so in the beginning but I am now almost done with this years wrappingsession and I is nowhere near the good leg but still better than before.
      Interesting with the litres, I have never had anyone mention that but I will ask my therapist of how many extra litres she thinks I have. Interesting.
      Excercising; I cycle about 12 km every day. I also do Qi Gong/Tai Chi and of course my walking. I don't think the cycling you do is only psycological, I think it is very beneficial for us lymphers.
      I am planning to take up yoga again next year. I have been recommended a class by another lympher, she says it does wonders for her leg.

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    2. Elaine, I'm keeping my fingers crossed for both of us!

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