Need to grumble

[OneLittleSpark]

Hi everyone. Please feel free to ignore this thread if you want, I just really need to vent. I’ve just got back from a rheumatology appointment that I’ve been waiting for for 3 months and, as you might guess from the fact that I’m posting about it, it didn’t go the way I was hoping. After the customary wait, I spent about 10 minutes with the consultant, had blood taken and was then told I’d have to wait (probably another few months) for an MRI scan. I know that the NHS is under a lot of strain, and I know these things take time, but I’m at the end of my tether with all this waiting. I’ve had this thing on and off since I was 13 (though now it’s all on and no off), I’ve been in a wheelchair since October and they still don’t even know what this thing is! I just feel like I’m living from one appointment to the next at the moment, and I don’t know how to cope with it any more. If anyone has any coping strategies, I’d love to hear them, but really I just needed to off load to people who understand what I’m going through. James has been great, but all the waiting is getting to him too, and I don’t want to load any more stress on him by whinging at him.

Thanks for listening guys, I feel a bit better for getting it off my chest.

 

[KPeveler]

i know how you feel! i just had an ortho appointment and the dr told me that my rheumy is wrong and that i am suffering from some mental illness! he kept asking how much i read about it on the internet and was SO annoying! it makes me want to scream!

 

[Earstou]

I understand exactly how you feel! It took me 13 years to get diagnosed with my Chiari Malformation. When I looked this up on the internet, I went "yup, that's it alright!". So then the neurologist sent me to a neurosurgeon, who told me I didn't have Chiari.
So back on the internet, until I found a Chiari expert, who confirmed the Chiari and operated on me!
The surgery did improve my life considerably, but I still deal with problems, the theory being that damage was already done waiting all those years for help.
My doctor thinks I read too much, also, and passes over alot of stuff. He was really surprised when he found out I now have a hearing aid, as he had ignored that complaint!
I really don't know how I cope, except at times the thing that keeps me going is my kids, I want them to have good memories of their childhood, not of me being sick. Sometimes I get mad (at the doctors) and vow to keep trudging thru this, no matter what! Soon, I'll probably have to take care of aging parents, and that will keep me going. You need to find that thing that keeps you, personally, going. Isn't always easy!
OT, what is whinging Is it what I would call whining(pronounced like wine with an ing), which is complaining? I've seen this before and I'm curious!!!

 

[SueM in MN]

OT, what is whinging Is it what I would call whining(pronounced like wine with an ing), which is complaining? I've seen this before and I'm curious!!!

It's British whining.
If you have read any of the Harry Potter books, you've seen the word there. His family (the Dursleys) live in Little Whining, which is a fitting place for the Dursleys to live.


PS. to the OP - I'd be whinging too. It seems like you already had an awefully long wait for such a short and unsatisfying visit and then the visit brings you even more waiting instead of answers.

 

[Earstou]

It's British whining.
If you have read any of the Harry Potter books, you've seen the word there.

Thanks, Sue!
I actually HAVE read the books, but don't remember the word. But of course, I also have short-term memory loss, so I'm not surprised it's there and I don't remember!!!
Which means I can read the books over and over and it's like a new book everytime .
(That's the only advantage I've found so far.)

 

[OneLittleSpark]

Thanks everyone, it really does help to know that there are other people out there who understand. As I said, James is being wonderful, but yesterday he was fed up and giving the world in general a lecture on how the NHS needed funding and the Labour government weren't doing their job. I know he was just trying to vent his frustration, but it didn't really help me at the time. Looking back on it though, it actually seems rather amusing, being wheeled through the hospital by a (quite literally) raving socialist .

To KPeveler and Earstou, I know the feeling. Why do doctors always seem to act as if they know your body, symptoms and condition better than you do, and dismiss anything that doesn't fit with their idea of what should be happening by:

a) saying it's an unrelated compliant (normally caused by something you yourself have been doing / not doing)

b) accusing you of making it up

c) completely ignoring it?

Why can they never just accept that what you're saying about where it hurts / what you're feeling is probably true, and try and find the condition / treatment / procedure, that best fits or deals with these complaints? Or is that just too logical? And I know what you mean about the hearing aid too, I told my Physio that I needed a chair, because I was a miserable, hurting, house-bound wreck, but he refused me on the grounds that "all the other doctors would laugh at me if I prescribed a chair for this" (I kid you not). He then tried to persuade me to "give crutches a try" despite the fact that I had told him repeatedly that it would knacker my wrists and leave me completely stranded. In the end I went to my wonderful GP Dr Thomas, who rang the Red Cross and got me a rental from them. Needless to say, he wasn't a happy bunny next time he saw me .

Some doctors are absolutely brilliant, but I always seem to get the ones that fit the above pattern when I really need them not to. Or maybe you only notice when it doesn't go the way you hoped. Ho hum, looks like Pooh said rain (or is that wrong ?).

Oh, and sorry Earstou, I didn't realise that whinging wasn't in the American lexicon. I'm not too bad at the simultaneous translation, but I do slip up occasionally. I guess I should have noticed when the spell checker on Firefox picked up on it (it claims to be British spelling, but objects to 'centre', 'colour', etc, ).

Well, here's a big for everyone who has once been, is now, or ever will be infuriated at medical things going wrong, doctors not listening, appointments taking an age to arrive and all the rest of the rubbish we deal with. And on a more positive note, hears to the friends and family who pull you through it !

Thank you so much everyone, you've made me smile, which is a big thing considering how I was feeling yesterday afternoon .

 

[Earstou]

Why do doctors always seem to act as if they know your body, symptoms and condition better than you do...

I was ranting about this to my mom when she said "Your doctor doesn't know what to do with you." I realized she is probably right. Since I have a rare condition, and the medical books don't have up-to -date info, he really doesn't know what to do for me.
I just wish he would give more credit to the info I find researching the internet. I don't believe everything I read, and usually search doctor's or hospital's websites, actual medical websites, not something "JimBob's aunt's cousin's dogsitter" posted!

Oh, and sorry Earstou, I didn't realise that whinging wasn't in the American lexicon.

No problem. I find it interesting to see the difference in British and American speech. I'm a curious person by nature, and sometimes ask too many questions. Please don't worry about it!