Has your lymphoedema stopped you achieving anything?

[LymphSuppNetwork]

[yorkshireuk]

My lymphodema hasnt stopped me from achieving anything im finding it harder to get around than I used to but I will never let it stop me.

[aussiegirl in reply to yorkshireuk]

Yes I agree, the saying goes "where there is a will there is a way".

[Kelmisty]

I only have mild lymphoedema, it hasn't stopped me doing anything, but some days it slows me down.

[mamajava]

Travel is daunting with LE. In addition to my clothes and personal items, I also have to pack

? Reid Sleeves, which are packed in a duffel bag

? Lymphapress pump, which is heavy, fragile, and has to be insured for $10,000

? pneumatic sleeves that go with the Lymphapress pump; they weigh about 10 lb. and take up as much room as the Reid Sleeves

? compression stockings, which are heavy and take up lots of room in my suitcase,

? CPAP - many LE patients also suffer from sleep apnea. The CPAP machine has its own carry case, but often there isn't room for extra CPAP supplies, so they displace clothing in the suitcase.

I also need to pack extension cords; I learned from experience that the outlets (for the CPAP and Lymphapress) are often not convenient.

[jinger]

Hving lymphoedema has stopped me getting several jobs last year. I am up front with my lymphoedema (it's not as if I can hide it!) and even though I explained what it was and how it affected me, I know it has stopped me from getting jobs. One potential employer even said to me he couldn't employ me for a customer-facing job as my legs could put customers off!

Luckily I have had a very understanding employer for the last 10 months that has done everything in their power to help me (new desk, chair and footstool). I am also given disability leave for any treatment I need that doesn't affect my sickness record or annual leave entitlement!

[morganite]

i had to leave my career of 30 yrs plus asa registered nurse, no adations could be made for me and yet im not employable now but not intitled to benefits either

[suzie_danger_girl]

I was going to say it doesn't stop me doing anything, but I think that would be untrue.

I have refused to let it stop me doing things I want to do and I think I can go the other way and push to do things to the level a 'normal' person can do. For example I have gone to festivals for 10 years. Even before I had my tights I've stood and watched bands ignoring the foot agony out of sheer will, and been glad of the dark walking back to my tent because people couldn't see I was crying in total agony at my legs and feet. I have driven on through utter willpower.

But when I've thought about this, things are different for me now. The bloke I'm with now is attentive and immediately notices, before me, that I'm in pain or exhausted and need to sit a while. Hilariously I've come to realise that I have the will to keep going longer then people 10 years younger then me, I was misjudging what's 'normal'. He encouraged me to get help and tights and was never impatient with me when I spent 30 minutes applying them in 30 degrees in a little tent. He won't let me carry heavy things I'm not meant to. I am slowly learning there's no shame in asking for help, and becoming militant about saying, no, I won't work in a warehouse with glass in it I refuse because its dangerous for my health.

So lympheodema hasn't stopped me achieving things, but I have learnt to pick the times I will say I can't do this, can you please help me, and the times when I say, I will suffer the excruciating pain later but damn the pain because although its 4am its time to go dance.

[morganite]

it stopped me continuing my nursing career of 30 years plus

[cathyleigh]

Hi,

like most links above- I continue to do what I can- mobility is severely limited now- have a blue badge, can only stand for a few mins at a time, walking is very painful. so I dose up well, 2xtramadol, 1xparacetamol and 1x ibuprofen-

travel is difficult- due to pain- I also have arthiritis in both knees and right hip- the extra weight of my legs exasapates it all.

I used to walk up mountains, dance for hours- I muss this lots.

now I can not shower for long, or even go round the shops- I can get really low, and fed up- always so tired, yet I do not give in- I changed careers from nursing, to counselling, now teach counselling courses, supervise counsellors, see clients. which gives me a great buzz.

I do get DLA - which helps. but no other benefits. so have to work.

Sex is really difficult to now, my husband is so loving and understanding- So I miss many things, that I won't be abler to do again- yet include new things to my list too.

be brave.

[janeymb04 in reply to cathyleigh]

Same here but i cannot claim anything but am luck i have a job and manage, I tried for DLA but was not awarded as they said i can walk the required distance. but after that is when i have the problem. Aww well i will just keep plodding on

[alfie19]

Aged 58. Primary Lymphodeama is both ankles and legs and thighs.

I can not stand to iron this has to be done sat down.

Sit on stool or have a very quick shower

I can not run. - walking is limited.

I can not jump to do exercises.

I can not dance to much pressure on heels and ankles.

I can not stand at kitchen sink so use chair or Perching Stool

I can not stand more than 5mins in a queue for shopping. Someone does it for me or online.

I can not window shop as this involves a lot of walking.

I can not walk around the supermarket. - Too painful and takes too long.

(how I envy the youngsters and so want to be like them).

Thankfully I can drive and have friends to help me.

But I want my own independence and find it really hard to manage - How do I get support?