happyshopper, I would suggest you do what’s called rehearsal - ring the helpline here and go through it with them, clarify all the exact points you need to make, write them down and then practise telling your OH or in the mirror so it comes out coherent when you have to do it for real. So easy to go in to a meeting, feel intimidated and your head goes blank and you make like it’s all right when it isn’t. Then on your way home you know exactly what you should have said and it’s too late.
Good luck to you, and to Katyb 
Hi Hymil,
Good to hear from you again, hope you’re OK.
Thanks for your advice, that’s a really good idea to ring the helpline which I hadn’t thought of. Yes, that’s so me, I come out of the meeting and then remember all that I wanted to say and didn’t. One thing that concerns me is that what if they think my lymphodema isn’t bad enough? It is only me saying it’s uncomfortable and achy, but to look at, you wouldn’t really see a problem. One minute I feel OK about going for ill health, then I completely panic and worry that I’m not going to get it because I’m not bad enough.
My last LN knew about all the problems I was having, and suggested I went back to clinical work. After I explained about wearing a sleeve she said it was a load of rubbish, and of course I can wear one because it would be discriminating against me if they didn’t let me wear one!!!
I didn’t wear one when I was clinical, becaues of my concerns re:infection control (I would wear it to work, remove it in the clinical area, and put it back on after work - not really useful and now look where it’s got me - a swollen (non visible) arm!
XXX
Hiya all,
I was trained and mentored by a fantastic lady that passed away only a few years ago. She wore a lymphoedema sleeve, and trained me to be a scrub nurse in theatre, a recovery nurse, and then gave me the confidence to specialise in anaesthetics…
It’s very different being the other side of the ‘table’…perhaps thats what made her so great?
Merc
xxxx
“To look at, you wouldn’t really see a problem…” Well duhh, that’s because it’s well controlled now *sigh* but YOU know how it feels. And no-one else does. Unless your lymph system magically healed itself, then the underlying causative problem hasn’t gone away so it needs to remain under control as far as I can see. And it sounds like you did give it a good trial. I think there’s a procedure called something like scintillography(?) that shows the real-time movements (or not) of lymph, but I heard it’s rare/expensive which is why they use simple stuff like measurements instead. By the time the measurements go up, quite apart from your discomfort, the damage is being done :(( which I see as pretty similar to, Would you like me to have a hypo and *show* you I’m diabetic? or to skip my anti-epileptics and wait to have a fit in front of you? I’ve known a lady who retired because her company couldn’t gaurantee to get her off to lunch the correct time after she had injected her insulin, you wouldn’t think that would be so hard. Condition medically well controlled, situation apparently not well managed, although there may have been other factors I’m not aware of.
You said your last LN told you “…of course I can wear [a sleeve] because it would be discriminating against me if they didn’t let me wear one!!!” Errr, no, they also have a policy about hand hygiene and standards of dress in clinical areas, because they have a primary duty of care to protect their patients. Your acquired disability is something they have to make reasonable accommodations for, offering to adapt your role if they can’t adapt the conditions you had to work under.
From your point of view as a patient, Having got it (mostly) under control, do you want it to swell again?
Merc, women like that are inspirational, so sad to hear she passed away. I’m sure she would be very proud to know what you achieved, and probably astonished to know the impact she had on you.
Read this thread with interest… Merc… could you write up what you were taught and publish it as research/whatever? It would be good for others to be able to give our Infection Control Leads… Been more of less keeping mine under control until the last couple of weeks, when it’s got worse and is now in the hand. I feel like the sleeve pushes the fluid to the hand, but maybe that’s just me - I haven’t got a glove (yet)… I’ve not worn the sleelve to the wards, but as I’m only a Chaplain and not “hands on” as such, maybe I could… have to go and see OH…
thanks ladies… Jane