I know I have lymphodema but I can't get my head round it.I am really not copping with the diagnosis I can't explain how I feel about it hubby said get used to it it's now part of you I know there are people worse of than me with it and I am not looking for sympathy I think why me do I not have enough to cope with the lupus the leaky heart valves bursitis in both hips asthma copd I had skin cancer all these things but this has hit me big time and I don't know why has anyone else really struggled with it.Thanks for reading x

24 Replies

  • Hi there, I can so relate to how you're feeling and it sure does not help when people tell you to get over it or get used to it. A very good resource is especially the link how you can cope and then to Pat O'Connor's My life with lymphoedema which really helped me with the emotional side of it. I have since had LVA surgery which has been very successful and I finally feel as if I have my life back, a different life but a great one all the same. Good luck and feel free to private message me

  • Hello AussieElaine, have just clicked on to the site and yes you are very right it looks a very interesting site full of information etc. Have not clicked on anything there to read yet. I must admit people on this site have supported me, given me information and helped out with so many issues and I am so very grateful to all. Do not know if I would be here if it was not for this site and the people that use it. I know this site covers all over everywhere is this other site in America as good as here the LSN? I just feel that the people here are like just one big family but better because no matter what time of day or night someone is around to support you.

  • Thanks , believe me I have never cried so much in my entire life when diagnosed with lymphoedema, to be told that there's no cure and the management of it is so time consuming I really felt that life was hardly worth living. I came across where they have a whole discussion board dedicated to lymphoedema. There are several different topics on all things lymphoedema and the ladies there are truly amazing. One in particular private messaged me and directed me to www.stepup-speak out and it really was a lifesaver and I would definitely encourage anyone with this dreadful disease to have a browse. All the best

  • Can you elaborate on how your life is 'back but different' since surgery? Really intrigued..

  • lizmurphy61 HI Liz. Just wanted to say I understand how you are feeling. I too had many health issues and then one day my legs started to swell. While I didn't get diagnosed right away, I was told nothing could be done about it. I hit rock bottom and fell into a deep depression that took many years to climb out of. I wish I knew from the beginning about MLD, stocking proper eating ect... it would have helped. There is so much more information about it today than there was 15 and 20 years ago. So I recommend that you learn everything you can and do what works for you. I am very blessed to have a wonderful husband that is so patient, kind and helpful. He understands when I get frustrated and realises I need much more rest than ever before. Some people don't realise that it changes who you once were and you have to make adjustments to life as you knew it. It is a loss and sometime we grieve and mourn for the life we had. So my advise to you is to be kind to yourself. Give your mind and body what they need and remember one day can be good and next day not so good. I'm not sure we ever totally just get used to it with is why so many people continue to look for answers and cures. The good news to remember though is that many more people are aware of this disease now and are looking for cures. So hang in there and be kind to yourself. All my best to you.

  • Hi, I think that every day why me how did I even get this I still don't no, I don't think my hubby just thinks well it's only swelling still has me running about after him while he sits on his skinny arse, I also have other health issues and I look for information every day on web, but I tell you what my 36A bra is getting tight now and I'm starting to fill the cups up, at the age of 50 I might need a bigger cup size soon.

  • You aren't alone Liz, we all took time and emotional work to get our heads round what this disease means for us on a physical, emotional and social level.

    I'm linked in with the Lymphatic Education and Research Network/ LE&RN as they are involved in cure research. I'm not a candidate for any of the current surgeries to reduce symptoms - I've been told by 3 surgeons who undertake the 3 surgeries currently undertaken in the US, UK and Europe (very hard to swollow being told they can't help my legs). None of the current surgeries are cures to the disease but for some people they reduce symptoms.

    We need a cure for Primary and Secondary LE. It's likely Secondary will have a cure before Primary as they are 2 similar but different kettle of fish. LE&RN is doing their best to make cures found for both ASAP. Here's my story shared on their website earlier this year.

    You'll see lots of personal accounts and a lot of other info on their site. The research web symposium library is my favourite part of the site. There are links to people who have LE blogs and websites which also make for positive reading

    You will get through this difficult time you are having accepting LE. It's so much to have to accept and it takes time. Cat xx

  • My thoughts exactly. I too have various other conditions that I've had to deal with over the years (and still deal with) but being told I had Lymphoedema has hit me for six. You're not on your own in thinking 'why me'. I'm struggling to get my head round it too. x

  • Thank you ladies hubbys not being un careing I seen someone on holiday that had it much worse than I do and I seen her struggling so much and I can't get the image of her out of my head and I'm not being judgmental in any way I know that there are people much worse with it than I am and I'm sorry if I have offended anyone

  • Hi Liz, don't think you could offend anyone on this site! Everyone is so friendly - and helpful. I also have days when I gaze out my lounge windows at all the folk walking past, on their way to the beach. Could scream some days - sometimes do! I have a wonderful hubby also, but there are days when I get the feeeling he is also struggling, feeling frustrated as he doesn't know what to do to help me thru some of the ''black dog'' days. My worst days are those when I can see something is developing in my legs and there is nobody to ask for advice etc. That's when I come here, and have always found answers.

    As Snaomi says above - at least more folk know about this disease now and are looking for ways to help.

    Chin up - you will get thru this, with the help of family and folk like those on this site. Sending hugs......


  • I have had LE for 19 years from cancer surgery.. cervical cancer. Also had breastfeeding cancer but so far no LE in the arm area. Have other medical issues and had a hip replacement 18 months ago. Myou first tantrum was being told I had LE from my waist to my toes and there was no cure but I was lucky to have survived the cancer.. I must be honest and admit at that moment I didn't feel lucky I was so angry at the world. Time passes and life goes on. I was determined not to give in to this in (my mind stupid) condition. My husband was sympathetic but had an alcohol problem and died two years after my first cancer. Teenage children at the time!!!. I have a good quality of life I play tennis five times a week walk my dog madly and go to the gym. I do keep my condition quite private too much to explain to friends. I don't do flying swell up too much nor do I ski now. Find social occasions uncomfortable (my own fault) re clothes, shoes etc.. body image thing.!!! But be assured there is a life with LE.

    Lots of good thoughts coming your way and you certainly not alone.

  • Thank you ladies I'm sitting now with tears in my eyes reading the posts I know I'm not the only one who has struggled with this I am thankful to you all for the words of encouragement xx

  • lizmurphy61

    Good morning, just reading the posts too, and I thank God there is a site we can come to for support because nobody else really understands how we are feeling. It is a struggle every day, can't stand for long. walk, sit properly, ironing is a nightmare even with a steam generator to help cut the time down there are so many things we can't do anymore. Got to be careful we do not scratch, bump into things and gardening my fav hobby out of the window because it is "be careful, wear your gloves have you got proper shoes on"? the list is endless. One feels like a child all the does and don'ts and with christmas looming on the horizon (there is only my hubby me and our cat) it is still going to be a nightmare. I have not even put and decs up for fear I will just tear them down again. I am that mixed up with a lot of emotions I do not know where to begin.

    All that can be done is to take 1 hour at a time, can't do anymore than that. Just not enough hours in a day it seems.

    Take care xxxxxxxx

  • Hi, just do what I do and don't put tree and decorations up, my house at Christmas looks the same as it does all year round. BAH HUMBUG !!!!

  • I'm with you Bev - every year it ended up being my responsibility to put the decorations up, do the cards, post same, wrap pressies, cook, clean then clean up afterwards and take down/store all the decorations. 10 years ago I stopped doing cards - I give a lump some to a charity instead - this year it's Wateraid. No decorations for 3 years, apart from some holly on the mantle piece. The kids have left home now, but come home for lunch on the day, with the instruction that they provide a course - starter or pudding - I do the main - plus, they have to wash up before they leave!!! It may all change if I ever have grandchildren, but until then, can't wait for January 2nd!!!

  • It's just a farse I haven't had tree up for about 10 year son is 30 and only left home last year, has a son to previous relationship 22 months old that lives 2 mins round the corner but she stopped me from seeing him when he was 6 weeks old. NASTY B___H she is but walks past my house with him every day.

  • Bev-1966 - It is far too commercialised these days and nobody thinks of the real reason it is done. Just an excuse for a darn good partying. Lost my mum 3 years & 6 months ago and from then on not one of the family speak to me not even my half sister who I saw born in 1979. Never have found out what I have done wrong and I will never get over it. Just want my mum back so that we can all get on again. Have not sent any cards out since then, husband's not bothered about it either, he is moaning about the weather as it is very foggy here and he can't hang the washing out. Will have to invest in a tumble dryer, maybe. What an awful woman your son married, so cruel to do this to you. I know what families can be like, found that out at my mum's funeral. Long story but have died inside myself - take care xxxxxxxxx

  • why don't you go to a lawyer to get to see him been there done it got my grandsons living with us x

  • Hi Lorna, can you help me, I have just tried to get on site via app and a box came up saying beta has expired what is that all about and what should I do ?

  • Lorna? Or me, Lynora?

    Not sure what the site problem might be - it could be a glitch. I tend to stick with a link through the unlocked website - the Facebook access kept locking me out.

  • I will just use it through the web browser and try in a couple of days with the app. Thanks

  • You lol

  • Best thought of the day xxxxx

  • The tree would have been left in The cupboard if it wasn't for the two boys they put it up and decorated it even though they are 15 they still like it up and they made a good job of it xx

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