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Shut up and put up? - Carers UK Forum

Shut up and put up?

Share information, support and advice on all aspects of caring.
My husband had an appointment with the Orthopedist today re the exploding pain he gets in his legs. He was told he has "a very interesting pain sensor system" and that it could just be a delevopment from his existing conditions, in which case he is already on all nerve/muscle relaxants and pain meds... I am hoping that they find something on his MRI because I can't even begin to imagine how he would cope with pain like this every day. And believe me, he knows pain, he is constant pain- just not like this.

Also my 6yo has another docs appt today, she still isn't well, really do think it may be ME/CFS (same as hubby) now that all of her blood tests, urine and stool samples have tested clear...think I will be back and forthing a lot from the docs as she has "Only" been suffering for 4 weeks. How long will it go on before something is done? Luckily her teachers have offered to send a note to support what I'm saying and how she's been sent home from school.

I am really sorry for going on, you wouldn't believe I am an eternal optimist given that the only 2 posts on the forum have been me whinging, I don't actually expect a reply but I am feeling desperately alone right now, trying to be the strong one and my friends don't understand. They can't really and I can't seem to find an easily accessible carers support group near me. I just needed somewhere to vent.
Vent here as much as you like Rachey. We will always listen, you dont have to be alone.
You are right, your friends cant understand - no one can until you have been in that position. Just tell us like it is, you seem to have so much going on at the moment, Im not surprised you feel like exploding.

Take care. xx
Never worry about 'venting' on here, everyone has times when they need to. You sound like you have a lot to cope with, and having to be strong for others makes it more stressful. I think doctors often forget the strain of living with pain and discomfort, they just see an interesting condition. Are there any websites, on ME, for example, which could give you more information and hopefully some support. Try calling the CarersUK helpline, they'll certainly have helpful advice and may be able to direct you to more specific organisations. good luck xx
Thank you for your kind words.
Who knew a small gesture could mean so much?
I will look into the helpline, after numerous calls to DLA, making (and cancelling) hospital appts I'm feeling a little phone-shy right now. Image

I just wish there was something nearby, they seem to cater for carers aged 40+ which doesn't apply to me as I am 26, or they only want to help carers who look after someone with mental health problems. Maybe I should set something up myself? Hmmm the cogs are turning now.

I did have a call from our Enhanced Care Hub but they were at a loss as how to help because DH has a long list of illnesses/condition. The standard response he gets is "You're too young to have..." Image
I will have to have a look through the posts to see if anyone else has set up a local group or something... maybe instead of waiting around I SHOULD take action? Thank you again, you have not only made me feel a little less alone but also inspired!
Take Care to you both xx
You're never to young to 'have' anything. How dare they say these things to your hubby. What about all the hundreds of children who have arthritis for example, I hope the professionals don't say that to them or their parents.
Sorry, I think that's a disgusting thing for anyone to say.
Don't you dare shut up and put up, as your heading says. You come on here with us, we've all ranted and raved at some point, how else do we express our feelings and thoughts. It's the friendliest site I've ever been on and am still sticking with it, even though I've lost my caree. We're all friends on here.
that's the spirit Rachey ! It's so hard on your own to keep battling when you don't get answers from 'professionals', so keep posting and let people know how you're doing, there's usually someone who's had similar problems and can offer advice/support. Although it's frustrating I think you have to keep on asking questions and pestering people until you find someone who will listen and deal with your concerns - they are out there, just have to listen to a lot of waffle before you get through to someone useful! This may not be appropriate, but could you keep a diary of symptoms, so you've something clear to give doctors etc. , might help them concentrate.
Take care xx
Just thought I'd have a sneak peek before the school run, this forum is quite addictive I see Image there goes the housework haha.
I am off to the gp this morning with my daughter and he is my hubbys gp, he is very good (it always seems to be the specialists/consultants that are the problem? ) so hopefully it'll be a reasonably painless visit.

Nananana, the last time DH saw a consultant he actually got up to leave because the consultant made him feel like he was faking... then he asked well if you have this problem, where are the meds to treat it.. when OH told him that he was on 60mg of Esomeprazole to bring stomach acid to normal the consultant soon changed his tune.. you're right it is disgusting and if it wasn't for the fact he needs certain things done I'd go in there and kick up a fuss, but then you worry about being penalised or sent to the back of the waiting list.

Lell, we do sometimes keep a diary but then you end up spending most of the day writing things down. Hubby has ME/CFS, Fibromyalgia, recurrent Diverticulitis, GORD, IBS, Femoro-acetabular impingement (excuse my spelling) in both hips, Asthma, anxiety and depression, hiatus hernia and this new back/leg thing and something not quite right with his liver (the enzyme to control the cholesterol isn't working correctly so he has to take simvastatin?) So it can get overwhelming at the best of times, a lot of the symptoms can merge and every time he goes back to gp they actually find something new. I just do the best I can and make sure I have a prepared "speech" when I go to appointments with him..

Despite all that I'm feeling positive today and ready to go "kick some butt". I'll let you know how I get on at docs with LO.
Thank you for giving me sanity xxx
Well done rachey - sometimes butts need kicking Image
If you are having problems with a consultant (and lots of them think they are god Image ) dont be afraid to say your piece. If you still arnt getting anywhere and you have an understanding GP you could go to him and he may write to the consultant expressing concerns.