You can have no idea what a relief it is to read all your replies about being tired and not hungry etc.
Not that I'm glad you're all suffering, that'd be mean and nasty, but it helps to know others are the same...it helps Himself as well actually...he's very good, even if I do poke fun at him from time to time, but I honestly don't think he always realises just how all enveloping lung disease can be...I often read out your comments to him...especially those in response of yesterdays post...he did listen and take it on board.
I have had the vague feeling that sometimes he thinks I may be 'putting it on'...he's never ever said anything which has made me wonder if that is the case so I have no grounds for my suspicion at all...just a little niggle, like an itch you can't quite reach to scratch.
Which has reminded me of something else to grumble about...very dry skin. Seriously dry, so it almost, but not quite flakes, especially on my shins and arms...thank heavens for Coconut oil which is easy to use and cheap but the soothing result doesn't last very long. It is also extremely appealing to the cats and the little dog Eilis...the cats lick the backs of my hands and ferret into my sleeves to find some more, while Eilis is focused on my feet...
If I hadn't found this site and the forum goodness knows how I'd have coped...Googling is downright scary and many places blind you with science anyway so you end up more befuddled than you were...my consultant is fine, but she's also rather snappy and abrupt, anyway ten minutes consultation every four months doesn't give much time to reel off all ones woes and questions...
And I don't remember how I found this place...the little enclave we come to rely on...the friends we make...the tears we shed and the laughter we share. I was probably looking for how to make your own chalk paint or humane mouse traps...up it popped and I've been here ever since.
Thank you...all of you.
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OMG! "I may be 'putting it on'" - I always thought that was just my own personal paranoia? When you wrote that little comment I know you never realised how it would resonate.
Its something that she-who-must-be-obeyed seems to ooze, that "I think you're just putting it on" attitude but then a few minutes later she says/does something that makes me realise that I REALLY AM paranoid!
That's for reminding me that I'm maybe not the only crazy person here (no offence meant).
I had extremely dry skin, looked like a shedding snake! I was advised by a dietician to take cod-liver-oil capsules, 1000mg daily. I did so until the skin recovered (quick) and now take 750 daily. I also found Dove products to be very good, both for bathing and for moisturising.
Thanks for that tip Toci. Just this morning, I was horrified at how dry the skin on my legs was and not much improved by the regular application of body lotion. I stopped taking fish oils about a year ago because I try to eat salmon at least twice a week and thought that was enough. But I think I'll start with them again now. Agree with you about Dove products . Nivea Soft is very good for moisturising also.
Think we all guilty of paranoia! I feel like my family thinks that sometimes, but deep down I know it's not so, just that I'm so damn independent, or is that stubborn that I don't ask for help unless I'm on my last legs. if you know what I mean. But hey! the nights are getting lighter and last few days have been nice, so let's just get on with summer!!!! janx
I sometimes wonder if my family think I'm putting on the tiredness but I also wonder if really AM as tired as I feel, or if I'm just imagining it 'cos in every other respect I feel fine, in fact I feel more or less the same as I did 20 - 30 years ago, 'most of the time'. Perhaps I'm just not used to being this old, (76) - or, perhaps I'm in denial and the tiredness is there to remind me that I'm supposed to be grown up and set an example.
Vashti have you tried Doublebase Gel? I have very mild lymphodema and have to keep my lower legs and ankles well moisturised so I get it on prescription but I believe it's about £8 for half a litre, to buy. It comes in a plastic bottle with a dispensing pump and it's very good, it's absorbed fairly quickly and doesn't feel at all greasy once it's 'soaked in'.
So glad you did find this site vashti as you are so entertaining. I was looking for a site where l could chat to people who would understand and l found HU. As a carer l used to feel isolated but not any more.
Good luck with everything and Himself is not so bad now, is he? Xxx 😉
Coccnut cream is no got for cats or dogs to like it deterats there stomocs so I would stop them for there own safete
Himself and all our himselfs and herselfs, must occasionally get a bit fed up and it's not surprising if they occasionally get a little cranky. Like the rest of us, they're only human. But I doubt anyone living with someone with severe breathing difficulties, would think they were putting it on. Anyhow 'Himself' sounds like a saint
I am reading all these replies with great interest as my partner's skin is simply dreadful. I have to shake all his clothes out the window every time he changes, and literally have to empty his socks! Am trying everything but so difficult since he's on 24 hr oxygen so you must not use anything on his skin that is oil based. Got some stuff from the Doc which doesn't do much at all. I researched the subject on this site and way back someone suggested soaking in bath with epsom salts. Trouble is he can't use the bath, but have tried washing him with solution of the water but doesn't seem to be doing anything except make the bath ( which he sits on a plank in for a shower) incredibly slippery, hence dangerous. So, if anyone out there knows of any non oil/ non parafin based cream that works for really flaky skin I'd love to know. It's more like pushing a snow plough than a Hoover around our house!
Thank god its not just me !!! I wear a lot of black tops under jumpers etc in winter, had to go to docs other day and when I lifted my top for her to listen to my chest I was SOOO embarrassed by the "snowstorm" of dry skin....I'm gonna try the cod liver oil capsules .
You always hit the nail right on the head for us Vashti - I have no idea how I came across HU either, but it's been a huge help health-wise and the first thing I pull up after I've deleted all the rubbish (like firms wishing to enlarge the penis which I have not, as yet found). So many lovely people on here too and so reassuring to swap notes and find there are loads of us with splitting nails, flaking skin and bruises that make us look like a map of some exotic islands. I have always had dry skin even in my palmy days, I too find Johnsons baby oil a big help but it's best applied when one is still wet from bath/shower - messes the towels up a bit but worth it if you make the bathsheet last for two "dries" - and I freely admit that I do.
Vashti, we all love reading about your daily activities etc and some of them are a real "tonic". So thank you. Must admit, my skin tends to be rather dry and flakie(not sure I've spelt that correctly) and you're right about coconut oil. Otherwise you can spend a small fortune on other products. Take care.
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