Feeling very low at present, have lymph (primary) both legs. They are enormous and I can hardly walk. Due to start layered bandaging mid April, however because of Breathing probs last year, 4 admissions to hospital, I could not get my legs treated, 2 attacks of cellulitis, last one in Dec. When I came home the skin was horrendous, dead and flaking. all the coughing had resulted in an umbilical hernia, because of the hernia and the breathing probs I cannot bend down to put on stockings. Friend came Thurs and said "My God all the years I have known you I have never seen them so bad". She came again today with another friend who's comment was "OH ELEPHANT Legs" That made me feel about as bad as it is poss to get. My worry is when I finish bandaging I cannot physically get down to put the stockings on, I will be back to square one, I really am worrying. I cried on Thurs and feel like it today. ( even a pensioner can weep sometimes.)
scottymeg, needs a peptalk, feeling very low. - LSN
scottymeg, needs a peptalk, feeling very low.
i know how you are feeling i have celluitise for fiftine years take penicilline every day does not help just had two weeks of bandages legs killing me and expected to be normal go shopping tomorrow and look after mother do you know what i mean
Hiya Scottymeg. First of all, please may I send you a hug??? Sorry to hear you're not having a very good time at the mo. Sometimes people don't realise their comments can be painful especially when you're not feeling quite yourself. I'm sure your friend didn't realise her comment affected you as much as it did.
It may be worth having a word with whoever will do your bandaging about you struggling to get your stockings on due to your limited mobility. There are various aids out there that can help. Alternatively, have a word with your GP or even the District Nurse. I have an Actiglide which is a bit of blue tarpaulin that I slide over my foot and helps glide my stockings on without much effort. If you can't bend down far enough to use one, there are these sort-of stands that you slide your stocking on and you step into your stocking whilst upright or sat down. Have a look on this website and it'll give you an idea what I mean - I'm rubbish at explaining things!
livingmadeeasy.org.uk/perso...
I'm sure others will be on here soon to give you more advice too.
Hi Scottymeg, I am soo sorry to hear you're going through all of this 
No matter how bad it is now please hold on to the fact that it will pass.
Jinger is right, please speak to your specialist about the mobility problems and how you're struggling with the stockings. I'm surprised they have not asked you your thoughts on it or how you're coping. Not sure what bandages you're using now but I used to used the bulky foam ones where i had to bend down and bandage and tape myself. I recently started using these ones that you can strap in while you're lying down and if you live in the UK these are free on prescription.
medasun.com/readywrap/ready...
youtube.com/watch?v=g9r11eM...
I know what it's like to feel low from this thing. I have primary lymphoedema in my left leg and I work in a Sales job where physical attractiveness is very important and you get judged a lot on it. I have managed to hide it from clients and work by wearing trousers and flats, i also cannot make a lot of summer functions because that would involve bikinis and showing it off. I have had people stare pointedly at it when i walking on the road and the wind blows up my trousers. If she's a good friend, let her know how you feel about and how her comment is not motivating to you, she probably doesnt realize that what we have is incurable and is something we have to live with all our lives.
Hope you feel better soon * Big hug* it'll be ok.
Ooh, I like the sound of these!! Gonna ask my lymph nurse about them....so much easier than those stockings!! I have awful trouble with them as I have fibromyalgia as well!! XX
thanks for the video, not seen this before will ask my Lymph nurses on 15th, looks easier than trying to bend down and drag stockings on.
thanks for yr kind words
scottymeg
All the best with the layered bandaging. It will make a tremendous difference for you. You may find however that you will need to wear wraps - that support stockings won't do the job. That is what I found when my bandages were removed. I now Farrow Wraps - foot bandages, foot wraps and leg wraps. I am an OAP too (it's a great club!) and I live on my own. I still get the layered bandage treatment from time to time. It's all a palaver of course but better than the alternative. Gradually the swelling will come down and you will get more active. Younger members of your family will think you heroic when the discover that this goes on for the rest of your life!
You are not alone we are all here to be an ear and empathise, i was in bandaging for 8 months as my skin broke down and like you i got depressed couldnt see the end to it. I had to have thetreatment and it felt so much better when they were on, It paid off and it worked, so it will be worth it, People who make comments based on ignorance are both unkind and ignorant so ignore them, Have the treatment and when its time for other compression garments let them know all your issues, the support you get then will depend on your local service but there is an end to it. It is also not wrong to feel low i think there is alot of stigma when you feel low but not from any of us, Good luck it will be worth it.
Hi Scottymeg,
Where do i begin, Well i think its with a big hug and a little word to the ear. You have a good cry, there is no shame in that at all. I bet every person on this page has also done this somewhere along the line.
We are all very good and putting a face on for others, but at times we need to be selfish and have that cry and not worry about who see's us or what they think. We have all to handle this condition and we all do it in different ways that makes us cope on a daily basis, so if this means having a good cry some days, then you go for that Scottymeg.
I myself have lymph in both legs and both arms. I have had Cellulitis on many occassions. I also was admitted to hospital in December and ended up on a Ventilator for a few days due to a very bad Asthma attack, then early January i had to have a bowel operation. So i can more than sympathise with how you are feeling. You just wonder when it will all stop and when you will be given that break in life.
I myself use to think i was so alone, my favourite saying was always
" why me, what have i done that was so bad that i am being punished like this"
But you know what the answer to this was, nothing, i am just one of the unluck people in life that has unfortunately been given this condition and no matter how bad i feel i know at some point i have to deal with it.
I myself allow myself to have those down days now, I even have the odd day where i say b...er it knowing that the end result will fall on me and i will have to pay the cost, bu if it lifts my mood and allows me to feel a little more human i have that day..
But my main advice to yourself is i think you need more help and a lot more support at the moment, I amn ot sure if you are on your own or not. If so i think you need to speak to your GP, also you need to have a network built around you of people that can step in and help care for you when things like this happen. If its the District nurse, or the Lymph nurses, but please try and get this put in place. Even if its a quick email to your Lymph carer to say help how can i deal with this today i am so low.
I have found an amazing Consultant, he has also told me i have Lipodystrophie and Lipoedema, but the most amazing thing of all was he has put a plan in place for me, i have now had 3 operations where he has reduced the bulk in both my arms and both my legs, this has made such a difference to how i move around now. I no longer feel i have two water drums attached to my lower limbs. But i have also reduced my own body weight which has allowed me to bend so much easier and move around better..
I wear the wraps that are in the video above, my waraps are called ferro wraps, these get applied after each operation to reduce the bulk by compression, they stay on for around 12 weeks, after this i get fitted with Compression stockings. I also have the glider sleve that one of our friends Jinger uses, this is a must if you are on your own. Even when the nurses come in to help me, they to use it so they don't hurt themselves when applying the stockings for me. This would be a life saver whils you have your hernia.
Having a hernia must be so troublesom for you, Please get your local Doctor to organise help whilst you are awaiting help on the Hernia. My husband just had his repaired and it was so painful so i really do understand what you are going through. No way can you bend and apply the pressure to pull on the stockings that is required as they travel up your legs.
I wish i lived near to you so i could pop in and see if i could even share a few stories or give so some support and chat about all the other things that you can have to make life a little more comfortable, you don't seem to have this in place by the sounds of things.
I hope by the time you have read all the little emails of support that you are feeling so much better.
please let your friends and family know that Elephant legs is not the best comment that they could have ever used, let them know how hurtful comments can be, that you to are human, yes you have to live with this for the rest of your life, but no, you dont have to listen to those comments.
I hope you have had that cry now and your looking at this page with a big smile and saying to yourself, ok lets get this done. First call to your GP to get things moving and put in place. Dont take NO for an answer, if he says you can't have , go back at him or her with, well what can i have.
Be strong and assertive why should you not get the help. Your condition means that you are entitled to some form of help and you shouldn't leave until they know just how much you can't do, and where a little bit of help can make such a big change for you.
Good Luck, all the best sending another big hug.
ninewells xx
what a wonderful response, thank you everyone. Only those of us who have lymph know what it is like. I do have the blue sleeve which I have used effectively in the past but the breathing probs and the hernia and arthritis have meant I can not physically put the stockings on and the enormous swelling is the result. I will see my lymph nurses on 15th for bandaging and ask them what alternative I can have, as for an operation I have multiple allergies as well as lung probs and there is a great reluctance to even consider an op. I had a lung scan in Nov and they wld not even risk the dye. I do live on my own and it makes it difficult.
I would like to thank everyone who has taken the time to respond, I know now I am not alone.
thanks for all the good wishes and hugs.
PS my GP visited me at home in Jan after I had spent 11 days in respiratory ward and said
"we have been discussing you in the practice meeting, your hospital stays have a cost implication"
I pointed out I worked till I was 65 and had never been an inpatient since I was 5 years old. (Not exactly a drain on NHS or GP resources.)
scottymeg
OMG Scottymeg,
He needs struck off I am so angry that he treated you this way.
I would move practice and put in writing why to the Board, he needs to be spoken to in a very hard way.
I am so uoset for you. be strong and stand up to him. I hope you have a much better Lymph Care Team that you can speak to and they don't treat you like an £ sign.
big Hugs
Ninewells.
thanks ninewells, I had a previous 'do with another GP in the practice. Went for years and years with no help for my lymph and asked if I could be referred to a lymph nurse in a Birmingham hospital. The reply "certainly not, we do not have a contract, they would charge us an arm and a leg" end of conversation. I eventually found out that Wolverhampton hospice had a lymph team and asked to be referred to them. Fortunately I was and started the bandaging and stockings but I had to do all the investigating. You are given water tablets and left to get on with it, unless you can ferret out the info for yourself. I have tried to change but locally other GP's say they are not taking on new patients. Maybe it is because I am a pensioner and would cost more money who knows???
I have been transferred from Wolverhampton to another lymph team, both teams have been very caring.
Will keep you informed if that is ok. Thank you once again, it cheers me up to be able to 'talk' to others who are going through the same as me. You have been very sympatico and I thank you for that.
regards
Scottymeg
Morning I do so hope you are feeling better and more optomistic today. We are all in a similar boat and some days it is so very difficult to keep smiling so my friend I send you a hug and a smile you are doing brilliantly. I am only a beginner at this so everything I read is so helpful to me. My nurse was talking about the farrow wrap as I have Fibro and a dodgy back as well.
Good luck with trying to change your doc we do need one that is on our side !
xgins
thanks xgins, I have had lympho for 30 years and I suppose long term it does get on top of you. So far I have been coping ok but this last few weeks added to the other probs I became overwhelmed. Due at hospital Thur am to see lung Doc, had another breathing do this week and am back on steroids and ventilator. All the messages of kindness has done me the world of good, it is great to be able to exchange with others as we are all in the same boat and can support each other. It has proved a great site as far as I am concerned especially for those of living alone. My nearest relative is over a 100 miles away so I am lucky to have good neighbours and friends. However, when you are alone and trying to struggle it does get me down from time to time. I keep telling myself there are people with more probs and I keep plodding on.
thanks for taking the time to write
regards
scottymeg
oh scotty meg, i'm so sorry i missed all this - my arthritis was playing up so i haven't been checking emails properly
but what a wonderful bunch of lymphies came along with wise words & comforting hugs - if there's one good thing about all being in this boat together, it's that someone'll know the answer to a question & everyone'll understand what it's like to have a day when the fedupness just gets completely overwhelming
nothing wrong with a bit of self pity every now & then! there are plenty of people who are coping with worse than us, but there are also plenty of people strolling thru life taking their health for granted & it would be sooooooooo nice to be one of those people, just for a day
& i agree that we can't wallow in self-pity too much - it's depressing - but you do anything but!
you're single-handedly coping with huge health problems that all need looking after differently, & getting less than no support from your gp
that really is outrageous - i wonder if the lsn phoneline people on 020 7351 4480 might have some ideas about how to find yourself a gp who's also a human being? they've been really helpful when i've phoned with questions or for a bit of a moan, & with the nhs having completely changed at the beginning of this month i'm not sure what the system is now for changing gp / complaining about one (but of course that takes even more energy you haven't got)
anyway, some of that practical advice sounds really useful &, like you say, it's so good to have somewhere to come & be with people you don't have to keep explaining stuff to
'i might have what you ignorantly call elephant legs, but i'm managing them & i can still manage to be thoughtful & polite. what's your excuse?'!!
Dear scottymeg and all above posters, big hug to you all as without all of us chipping in we would be in a far worse place. Is there a local support group near you? the LSN has a list on their website. Cos sometimes it's good just to be in a room with people all wearing armsleeves, leg wraps et al, and no one making thoughtless comments, it makes me feel less alone.
with love
Hi Scottymeg,
Just checking in to see how you are, I hope you have managed to all your appointments and are now working with your new team at Woverhampton. Still keping my fingers crossed when i ask, Have they now shown you how us Lymphies get treated when you have a good team behind you, i so hope they have.
Working with a team that care and specialise in your condition makes such a differance doesn't it.
I am sure some GP's are just so not educated to what we suffer from and how it impacts on us on a daily basis.
Sat with legs up and laptop on my try today haveing a lazy day, was on my feet quite a bit yesterday so legs saying NOT TODAY MUM LOL.
Hope your smiling today.
Ninewells. x
Well folks this is the second post, as I said was due at hosp to see consultant abt lungs and was pretty breathless,Go for x ray, came back and he said u are not going home,What joy I sat in wheelchair for 8 hours waiting for a slot in EAU, spent 1.1/2 days on hospital trolley bed. Just got out at 6.30. tonight Sat 13th. Told Cons had appt for multi layered bandaging on Mon 15th Friend rang clinic to tell them news. All last year the lymph wld not risk bandaging. Cons. says they are experts, they wont bandage without letter, guess what?????? found out today he has gone on 2 weeks holiday without stopping by my bed yesterday. Anyone wonder if he was avoiding me??????????????. I tried to go out 3 weeks ago to get cash and could not get back into car. My legs were so heavy I kept hitting the sill and my foot kept dropping in to gutter that is how heavy and swollen my legs were. 10 days of hospital diueretics has reduced that thank goodness.
" things to make u smile, no signal on mob, no one knew where I was. Friends ringing the house, no answer and eventually tracked me down in hospital. Nurse came the other night to take my temp which had been high. It was after 10.00 pm I lifted my arm to hold back the thermometer and he said I must take temp. I kept pushing him away,I was trying to poke my finger in my ear to remove a wax ear plug.
LOL LOL
scottymeg
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