Overwhelmed

Hi everyone,

I would like to introduce myself to you all. I have been lurking in the background but have never been brave enough to post. However, first time for everything.

I have been diagnosed with Primary Lymphodema.

I wear compression garments on both of my legs, however my right lower limb is considerably bigger than the leg.

I have had two cellulitis attacks in the past 10 years and both times I was hospitalised for two weeks. The latest, in December 2016, left my leg much much larger than before.

I'm very overwhelmed by this at the moment. I find it so depressing to say the least that I can't wear my old jeans or even shoes because my foot is so big.

I have young children and I feel so guilty that I haven't got the courage to bring them swimming because I am so embarrassed about my legs.

I am based in Ireland and I do not have any Lymphodema nurse that I see you speak about in the uk.

I see a private therapist, who has been my rock through all of this. All treatments are private and cost me €100 per session. This is every week. I also have to buy my own compression garments at a cost of €500ish every two to three months. This does cause financial hardship for us but my husband works so hard so that I can keep up my MLD appointments. I do feel a burden though.

Apologies for long post but it's hard for anyone to understand unless they have this blasted condition themselves.

[Happy2015]

Hi

I am so sorry, but glad you have had to courage to speak out on here. It's a very useful place!

I know how awful it is and how you feel. I'm in Scotland and have been lucky to have support. It's a post code lottery and it's not fair.

Do you know of anyone else in your area that has Lymphoedema? A wee network might help you. Hopefully you can find people on here.

X

[Julia-25]

You don't say if you are in Northern Ireland or the south but check out the Lymphoedema Network Nortern Ireland lnni.org

There is also a group on Facebook,in fact there are several groups on Facebook.

Wishing you well

Julia

[Marjol80]

Hi I understand you very well, as I also have children, youngest three months old and leg lymphoedema for 12 years. I do not swim due t recurrent cellulitis. My children go swim with my husband but I also feel horrible when everybody goes for holiday by the sea to chill out and I can not. You can pm me if you want. Hope I could help x

[sammyvan]

Hi Overwhelmed.

So glad you felt you could post at last - join the club and chat here to some lovely folk.

I do feel for you, not having the support you deserve, and having to buy all the necessary wraps and stuff yourself. Lymphoedema really is a ''Post code''' lottery as far as I can see. Some areas/counties are funded and have drop in centers, specialist nurses and even GP's who know what Lymphoedema is!!! What you need is to make close contact with someone in the medical field, your GP, a district nurse or clinician, and discuss this with them. Ask if they could not research for you, find out who else may be in the same boat in your area? Most times it is just that not much is known yet, and if we, the patients, are willing to explain and educate, then we stand the chance of getting more folk to understand exactly how isolating and lonely life with Lymphoedema can become. I get the impression that nurses and staff WANT to help, they just don't know how?

I have just spent a few hours on the Laptop, looking at trousers that will cover these trunks I call my legs! Having hidden away at home for ages, I have decided that as soon as I am over this latest ''one on one'' with Mr Cellulitis, I am going to make myself go out, maybe use my wheelchair and zip off to the shops, have a coffee..... and if somebody stares at me I will just realise it's because they don't understand. Talking to folk on here has made me realise we need to get out and live our lives as best we can. So I really hope you get to at least go with your family to the pool, and also realise that even if some folk look at your legs, it may be they sympathize with you? I guess we just have to ''have a go''! There are some really great ideas for ''cover up'' clothes out there, even sites like Amazon have inexpensive tops and trousers that cover up.

Like others, sending you best wishes - let us know how you go...

sammy

[ofcourse in reply to sammyvan]

Hi Sammy have you checked out

all the pleated culottes and full trouser cuts they have now in

H and M, New Look and Top Shop?

I bought 5 pairs of New Look

all round pleated trousers for

my mother from New Look. She has very heavy legs - ankles 14 inches.

It's on trend at the moment so

Take advantage while we can.

X

She is 100 almost and lived them

[sammyvan in reply to ofcourse]

I will certainly take a look at them - always on the look out for HUGE trousers! So far I have found good quality 'wide leg' at SimplyB, JDWilliams, and of course Amazon. Problem buying online though, is sometimes the picture and reality differ rather dramatically! I ordered what i thought was a loose, flowing and long tunic top...said that 'one size fits all'. My 11 year old granddaughter loves the top - and had a good laugh when I told her I ought it for myself!

Thanks for the info - always good to hear about items and places to look.

xx sammy

[lovesradio]

Welcome to our super supportive forum dear Hidden. Others have spoken about the postcode lottery and here in UK we benefit hugely from the Lymhoedema Support Network lsn.org.uk which has lots of good stuff and can be accessed from anywhere in the world!

Good luck xx

[billiechillie]

I know how you feel. I do not say that lightly. After years of having very little help, I paid to have private lymphoedema treatment consisting of MLD, compression bandaging and garment sizing and fitting. This was all amazing and I was able to buy shop bought trousers for the first time in 20 years - and I cried. I have primary lymphoedema. Had it since the age of 15 and am now 44. However, I cannot take my grandchildren swimming, go paddling down the beach and sometimes it gets me down so badly. Some days are a real struggle mentally more than physically.

Having access to these groups really uplifts you knowing that you do not have to put on a brave face when people are staring etc we are all in this together - very supportive. Thanks for being here 🙂

[The_Lympha]

Hi Ms Hidden....it has taken me +20 years to "come out". This summer I have been wearing a dress (with legs on show) and I now pick up the kids in my gym outfit. So many mums have stopped me to ask what is wrong with my leg....people who have seen me every day for the last 6 years at the school. SO - don't be afraid to show your legs if you want to wear a dress, shorts, cropped trousers or go swimming (I do and it is such a great workout for your legs). You have the right to do so. And if people look (because they will) then let them...and if they ask then you can choose to enlighten them and let more people know about this condition. Do what makes you happy and you will get way more confidence

[Jayne1959]

Hi

Have a look at the Facebook group, lipodeama private chat. There are so many helpful ladies on there with the same condition, they meet up as well in different areas. Lipo/lymphodeama is an emotional and painful journey. I have had it for over 30 years and find this group excellent.

Jayne x

[Jayne1959]

Sorry the aqual group is called "Talk lipodeama private chat" if you request to join they will add you.

Jayne x