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Living with lymphedema

Hi I am lizzy I have had lymphedema in both my lower legs for 20 yr now it don’t get easier it get hard as ur all will know but trying to manage it can be hard

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Hi Lizzy - do you have support from friends or family? Do you get stockings from a Lymphoedema clinic? Are you in the UK?

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It can be hard but i found that accepting the condition and pacing yourself helps whenever you are sat down have both feet and legs elevated so legs are above the heart to drain the fluid. When in bed either raise the bottom of the bed with blocks or have a deep pillow on the mattress to rest your feet and do deep breathing exercises when in bed and outside

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Hello Alfie19,

Hope you do not mind me reading your reply but found it very interesting, although I am aware of the leg raising bit, find it so hard to pace and accept this condition although I have had lymphoedema/cellulitis for many years. I live in a dream world and think it will go away when I wake in the morning, but no it is there all the time. It has stopped me from doing my chores like I use to, as legs ache and feet swell whatever I try doing, I also have an inoperable back problem which has plagued me for over nearly 18 years and am a lot of medication, but this lymph etc., as well is a complete nightmare. Makes me wonder what on earth am I here for most days. I do what I can but when looking around see that other jobs need doing and it drives me mad as I want to be "normal" again and tear round getting things done like hoovering, washing the floor etc., but it is impossible now. I really hate this lymph/cellulitis thing and wish I had never heard of it let alone have it. I know there are people who are more poorly and this I understand and wish I could help them, but I can't help me accept how my life has now become. It is not easy.

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I am so glad you replied to my message and that I am so sorry you find it hard to Accept your condition I also find it hard to Accept and like you when I can get some sleep I wake up hoping everything will be normal it is very hard coping with everyday life. I was told to accept my conditions by a therapist as I was very depressed and kept asking myself why me so I thought I would try and accept it but it never goes away we face with it every day we can try and cover it up with loose fitting clothes the condition is still there and others do not see what is going on inside the heavy aching feeling and unbearable pain we experience others have said to me well looking at you you would not know there was anything wrong with you then i show them my feet that shuts them up. Do you have anyone who can help with your chores any family etc. I would like to know how you manage to take your mind off your illness whether it be reading tv etc.

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When resting to stop myself from getting too depressed. I tell myself enjoy this rest you are treating yourself cos you are worth it. There may not be a cure but being able to manage the condition and making things easier for yourself helps. Daily deep breathing exercises rolling back the shoulders feels like having a massage and meditation helps me to uplift my spirits

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Thank you Alfie I will give that a try. Bless you for replying x

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Yes I have accepted it because there’s no cure but it is hard to do normal every day things because of the pain and discomfort

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Lizzy I fully understand I am the same as you I have accepted my condition and it is hard to do normal every day things but we have to pace ourselves to what is comfortable to allow us to move around. Some days it can be too painful to wash the dishes so i either was as i go or leave them and do them before bedtime as there is nothing worse than facing dirty dishes in the morning.

I have easy meals made in the microwave or slow cooker or have a sandwich when I don' feel like eating.

I have someone who does my shopping for me or it is delivered.

My body tells me when I have over done it cos the next day I am in excruciating pain and unable to move much so have to rest up for days until my body has rested. We are in charge of our own bodies so please be gentle and kind to yourself.

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Yes that’s how I feel some days it’s an effort to do daily things at the moment I go work 16 hours but that’s becoming very hard for me thanks for taking the time to tell me that I not alone with this condition

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Hi I also have it in both legs after having lymphnodes removed I had cervical cancer and had a radical hysterectomy . It's been four years and I know it's tough I get days where I'm very down I work full time in retail so I'm on my feet allday by the end of the week when I've swelled more I always think I can't do these hours but I when I worked part time I nearly lost my flat and got into debt so it's a case of having to :( . I've started cycling no matter how tired or swollen I am I make sure I go for a 45 mins cycle and it really helps oust thee fluid up the legs . It's hard to find the energy at times but now it's getting easier as I'm getting fitter . If you can't face going out or weather is bad indoor bikes are good I put the TV on and before you know it job done ! Excercise definitely helps and it's gets easier the more you do it I promise. X

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Hi lizzy, I've had lymphedema since I was 23 I'm now 54 in my left leg , it's hard finding pants that fit on my leg and shoes don't fit have to get a much bigger size, now I'm worried cause i need a knee replacement, really scared I could lose my leg, can't find good doctors in new jersey

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