I have Lymphedoema in both legs, one worse than other but wasn't diagnosed for years as my doctor wasn't interested in what was happening to my legs. A nurse spotted it and I was fitted with stockings. By then I had a lot of small lumps all over my shins but the stockings were comfortable. I had to stop wearing them because, with being disabled and overweight I couldn't reach down to get them over my toes and feet.
The lumps started to get worse and my leg ended up looking like the elephant man and I had lots of infections. I finally found a vascular surgeon who agreed to remove the largest lumps, 34 in all and am now recovering. The Lymphedoema nurse said I will have to have compression bandaging and because my legs are still so lumpy the bandaging will be very thick and I won't be able to wear any shoes, even the Hotter ones.
How am I supposed to manage being housebound? My partner has a serious illness and I drive him to hospital, GP etc many days a week. I also have appointments for my other conditions. If I'm housebound we will both be in a serious situation. I'm 71 and feel I may as well be dead with this. It has made my depression worse as I feel trapped.
Any one else experienced problems like this? Thanks for your time.
Written by
gellytot
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I think you would find it really helpful to phone the Lymphoedema Support Network. I don't have the number to hand but just internet search them for their website with all their details. Ordinary compression stockings should not make wearing shoes much harder than it is without. I wonder if you are going to have multi layered bandaging. That does make shoe wearing much harder but should only be for a few weeks and, for me, the results were fantastic. I think you do need to get advice from the Lymphoedema Support Network. Also you can get a metal frame that really helps with getting compression stockings on , my sister uses one - fortunately, so far I have managed by yanking mine on but will get a frame when I am older and can't do that.
If I remember correctly the nurse did say multi layer bandaging but didn't say for how long I needed to have them on. I will try the Support Network and see if they can help. Also I have seen the frames that help get the stockings on and wish I had known about them when I was first given the stockings; I would not be in this situation now! Hey ho, one of life's little annoyances. Thanks for replying.
Hi gellytot. I really feel for you, but please try not to despair. You need to do everything you can to make your legs better, so if that means you need to ask for extra help while you're being bandaged, then that's what you should do. Try the GP or Age UK - they should be able to put you in touch with people who can help with appointments, shopping and the like. It's no fun but it shouldn't be forever.
i fel such empathy for you, I wasn't diagnosed for20 yrs after people not knowing what they were doing, I was a registered nurse for 35yrs and it has cost me my career, I spent 9 months in bandagaing, during that time I could hardly go out, shoes were a nightmare and I couldn't get any on prescription and without income couldn't buy any. It had an impact on my life and others do not realise, not even all the people looking after you. I did perservere though and now I mange most of the time in below knee stockings so there is hope through what you feel is doom at the moment. As your partner needs you to care for him is there not a social worker or someone who could advise you both in your situation, I hope you find the support you need, we have all been there, I was very depressed for along time initially. Take care we are all here to talk to.
I'm actually going to contact Social Services this week to see if I can have any help with various problems I have with mobility and managing at home. I was told that I may be eligible to have a Direct Payment made so that I can buy in some care.
so sad to read of your plight but welcome to our group, please do not despair. Others have given good advice about where to look for help and support. I attend a Lymphodema clinic and see people with leg conditions arrive in transport provided by the ambulance service. They do seem to hang about a lot but at least they get taken door to door. Lots of them have footwear that is provided with the bandaging and looks similar to that given to people who have plaster casts on their foot, wrap around and Velcro ties. Although I am 58 I tore a ligament, or was it tendon in one of my fingers putting on my stockings last year. The tip of my finger was all floppy and looked dislocated but no pain, My finger would only stand up if I held it. I think they called it a hammer finger. I had to go to occupational therapy for weeks, but did get given a metal frame for getting my feet into my stockings. I slide the stocking over the frame and slip my foot in. I do still have to pull them up but don't have to struggle over my toes and foot.
Please let us know how you get on with bandaging and everything.
Thanks for the reply. Everyone has been so kind and helpful
Hi, reading your story makes me so angry at the lack of support you are receiving from your GP. Most surgeries have a car service that you can use for transport to appointments. Hospices & hospitals can also arrange for transport, unfortunately it is up to you to ask when you have your next appointment.. Ask for an appointment with your social care team they can often put in services for the time you need to care for you and your partner. Do you have a local hospice that has Lymphoedema Support? Macmillan might also be able to help or at least point you in the right direction. You have made great strides in the last two days. Firstly you have asked for help and secondly and most importantly your have talked about your concerns. Speak to LSN on Tuesday, see if they can help. Take care, really hope you will find someone to help you soon.
Thanks for replying. My other medical conditions are arthritis in knees, neck and now possibly hips and spine, asthma and I also have to have 6 monthly checks after having breast cancer. My partner has Wegeners Granulomatosis and has a number of clinics to attend. We tend not to eat healthily and eat microwave meals normally .I'm not really interested in food. I used to contribute to the Red Cross and one of their aims was to help people locally but when I asked for help for my husband to visit me in hospital they wouldn't help. I'll look up those websites you mention. Thanks very much
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