Lack of understanding

[62carolo]

Does anyone else have annoying comments relating to handling of things, I have lymphoedema in my right arm, and if I hear any more comments such as people manage who have lost an arm I think I shall mildly explode. I dio find I am clumsier and weaker in my right hand and feel sometimes there is a total lack of understanding of issues like this.

[naominorthenellis]

Hi there. platitudes can be extremely frustrating - in most cases we all know there are people out there worse off than ourselves; but that means nothing when coping in daily life. I can understand that you feel clumsier when the size of your lymphoedema arm is so much greater than your good arm. having bilateral lymphoedema in my legs i often feel like a baby elephant around my slender limb family and friends. There is a product called the Lympha-Press available which is fantastic in managing your condition. I am not sure which country you live in but i would be happy let you know who your in-country distributor is. I distribute in the UK and Ireland and can speak personally for the efficacy of the product that i use in conjunction with my compression tights. NNE

[62carolo in reply to naominorthenellis]

Thanks I would like to know more. I am in the UK

[naominorthenellis in reply to 62carolo]

Hi there, send me an email and i will arrange for you to try it. [e-mail] Are you currently getting any treatment at all? we can discuss over email. NNE

[62carolo in reply to naominorthenellis]

Hi my e mail address is [e-mail]. Yes I am getting treatment just finished second course bandaging.go in between about once a month privately

[jenet in reply to naominorthenellis]

Hi I would interested in trying the lymph-press. I am in the UK near London and my email is [e-mail]. Please let me know what I need to do . I have breast cancer related Lymphodema in my left arm

Regards

Janet

[pushkin]

absolutely !! And it can just as easily come from clise family members. ignore the ignoramouses out there and concentrate on educating your close family cirle about all aspects of the condition so that they have a better idea of the problems associated with the physical aspects ab dtruggles with your day to day living. I KNOW! I have had L for 25 years. in all limbs and where I live there is no help. I have had to look L in the f ace and say stuff you and get on with life. In fact I would say to anyone with any L that I have never believed that L can be in one part of the body only! The L system is a whole system within the body of everyone and therefore it is logical that when one particular area is initially affected then the whole L system is affected.

[62carolo in reply to pushkin]

Thanks for the comments. I thought I was getting over irritable. In my case it was close family members that seem quite dense at times.

[pushkin in reply to 62carolo]

They do not understand because it is a largely unseen condition. It is also much worse in damp and wet weather so watch for low air pressure. It plays hell with me and makes me very clumsy with my hands. You have to educate them gently. Tell them yo will happily give your L to them so they can experience it and live with it!

[62carolo in reply to pushkin]

I know and I do try but I've had a lot of health problems and I think it can be an issue for those around as well

[pushkin]

sorry... a few gremlins around.........circle......and struggles.....

[sleevelady]

I've had "Well none of us are getting any younger" when dismissing my condition at work. And "I know someone who can't use either arm and has a full-time job which he does using his mouth" Totally maddening and dismissive. Just made me feel I wasn't trying hard enough! I'm sorry it was your family - I hope you can help them understand.

[62carolo in reply to sleevelady]

Me too before I left work. It took me ages to get any kind of support when I did work whereas support for folks with more known issues was no problem. That makes me sound cranky, I was nt but I did get fed up

[goodtimes]

I have also in the past had comments but put a stop to those quickly and try to deal with people that have empathy and understanding and eventually I built a support system..this is a wonderful site as it explains so much which has helped me. I live in Miami and was able to find Suncare Therapies who deal with treatment.