'Pin the tail on the donkey!'

skezier

Hi all,
Forgive me as I am 'new' and I don't have the right to rant, rage or kick against the sytem that is the NHS. I know some readers will be feeling just as low and just as worried as me and I'm sorry but I feel like I'm going to just scream and not be able to stop! I am still very mobile, I have no right to think poor me, I have no right to be bursting into tears and generally falling apart, and I do know it! .........but...........
I have huge amounts of OA in both ends of my spine and other bits here and there. I live on buckets of pain killers now recently added to 'beefed up' they call it. I do have other conditions and one I was born with but its no big deal and yet suddenly it has turned in to a donkey and 4 consultants are playing pin the tail on it!
I get batted between all these different departments and in a couple of weeks they put on the blind fold and head for the donkey, its got that many tails on it if it swished them it would fall over!!!! What does it take to get diagnosed once you have one or two 'conditions'!!!!!!!!! they have the standard cop out. The consultant in charge of my 'donkey' keeps saying ' well I have never heard of it doing that'. And then today I got a copy of another letter between 2 consultants and now it seems either my donkey has breed or its got a friend and they are all jumping up and down covering that one in tails as well! What have I got, a tailess donkey sanctuary!!!!!!!!!! Why don't they just find out whats wrong and fix it........ Or say they don't know!!!!! At least that I could respect.

.........And........

Why do GP's have to be so dam brutel!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
(I'm sorry I know I'm raging but some of you may sadly know too well where all this anger and fear driven emotion is comming from!)
I have masive pains here and there and I started that involentry twitching, numbness and pins and needles thing and I rang NHS direct for some advice. They made me give my word that I would make an appointmen and see a doctor (I have a VERY bad relationship with them). I rang in, couldn't get an appointment for 'years' so the duty doctor rang me......... He wasn't interested just wanted to know when I was having the injections, I'm on the list how do I know how long it will take? He said I didn't need to be seen......trot, trot, trot here comes a donkey, and he'd put yet more tablets up for me. He then said 'of course if you gave up your life-style and rested, well you know you have to do it so.....' In other words go to hell till you give up your life!
The tablets were muscle relaxents.......... My spine doesn't hold me up, my muscles do! The bones have had it, they talking about de-nerving me! its useless! but the muscles aren't!! 24 hr on those tablets and I'm in more pain than I ever though possible. I have really forght this and why can't they be on my side instead of siding with the OA!!!!!!!!!!!!!!!!! I know I have got to make changes BUT NOT YET!!!!!!!! I have comitments and I have to see them through their lives first because otherwise I couldn't live with what I'd have to do. Why is it only one of my consultants understands what that would cost me? Because I'm a number, a name on a bit of paper, a non entity with a trail of donkeys all swishing their lovely new tails!

Here endeth my rant!

I'm sorry and I probably shouldn't post it but I can't talk to friends, they don't understand. They either think I'm suicidal or I need the pull your self together speach, I get angery when they tell me it could be worse......It's going to be! At least in cyber space I can voice how I feel, but I'm sorry I probably shouldn't.
Take care and forgive my anger! Please.

(no donkeys were hurt in the making of this rant)

Wonkylegs

well ranted! I bet you felt better just for getting that off your chest? It was obviously from the heart, and I think that many of us who have been experiencing different branches of the NHS over recent years will recognise some, if not all, what you have described.

There will always be someone on here who is in a similar situation. Hopefully with the combination of all the experience on here, you will get some helpful suggestions as to how to go forward from here.

One thing I will say to you right now though ........... just because there will be people who are worse off than you are at this moment, it does NOT mean that you ahve no right to moan or complain. You are you, and what is going on for you right now is important - no two people cope with the same situation in the same way. So do give yourself some slack, and accept that how you feel right now is right for you.

sending cyber hugs your way
((((((((((((((((((((((((( )))))))))))))))))))))))))))))))))

jackie1955

Hey there - better to come on here and have a good old rant than bottle it up inside - its good to talk

I'm new to all this and hope to goodness I'm lucky with my rheumy!
There are some scary stories on here about medics

Your right, friends don't understand, and to be honest neither do most people! When you tell them your being referred they generally say they've got a 'bit of arthritis' and 'try cod liver oil' :roll: Gee, if I'd got just a 'bit of arthritis' I might not be so worried :shock:

Anyway, hope your feeling better after your rant, and sending you a hug to cheer you up

skezier

Wonkylegs wrote:

Oh Wonkey legs thankyou, I was worried about posting it but I just needed someone somewhere to know what's happening to me. Your very kind and it is much appriciated. It's the animals that I worry about...... but not that donkey! If I had to stop they have to go and as I'm sure you relise they are not just dogs and cats. I know I couldn't do it as they were, a long time ago, destined for the freezer and instead of that I gave up meat and they have had some life! I didn't know I was going to get this bad this quck back then otherwise I shouldn't have done this life-style!
It got a bit basil fawty there for a min I think, but it really did come from my heart and thankyou for the hugs. I am concerned over the injections and the proposed de-nerving, my vets are concerned as they point out it is illigal to de-nerve a horse...... They also have said they'd shoot me! Bet they wont till I paid em! :P Take Care, Cris.


Jackie, please don't let my rant worry you, when the system works it works well. I am in bad post code lottery area and that truely doesn't help. You'll be fine, they didn't write me off till I was 40 and had more than 2 conditions so hang in there. Don't let stupid comments by people with no understanding up-set you..... I do and look where it gets me! :P It was ok for years, its only the last 10 that I been followed by a tailess donkey! Take care and good luck, and don't worry.

colinone

skezier wrote:

Hi all,
Forgive

Hi Skezier, your forgiven, you have every right to complain and moan and rant ans sceam and shout. We people travel a long hard road with its ups and downs, and what seems at times to be more downs than ups its a long hard battle. We are not all the same and although you meet people on the site are have what seems like more illness than you the crux of the matter comes down to pain and whos to say how much pain one can or can't cope with. when your in pain 24/7 its so hard to cope and then on top of that you have that problem with the doctors no wonder you feel so bad. You go ahead and rant all you want. I've not been on the site to long but i'm sure you will meet people with simular problems. I hope you feel better soon keep your chin up and the stress down
Colin

skezier

colinone wrote:

Hi Colin,

Thanks for that. You not sleeping either? I should but I have pushed my bones to their limit today and I know they are waiting for me to lie down so they can play 'pay-back'! I joined recently as I felt, and indeed have been, written off by the NHS - You'd never guess would you?!. They say they have done all they can do except pain relife. Your right stressing don't help. It was the dr on the phone that up-set me so badly.
The sites been very helpful and you people understand because sadly you've been there. I so wish you hadn't! I really hope that other people get kinder treatment from GP's and Hospitals, excluding my Rumo Friend they don't even pretend!
Anyway I must go get my pay-back. I hope you have a restful night and maybe oneday they'll come up with a cure eh?
Take Care and look after your self. Cris

woodie

Gosh, I think you've just said what a lot of us feel at times. I have oa in my spine and neck and it is very painful, so I can see where your comming from. The pain makes it harder to take and making lifesyle changes can be easier for some than others. If this had happend to me a few years ago, when times were harder, well, I don't know how we would have coped.

Being shoved around from department to department, which is happening to me at the moment, is worrying and the way the system works is just plain silly. My rhummy has to discharge me and write to my gp recommending I be seen by a neurologist and my gp has to refer me as a new patient. That way I get a quicker appointment. If the rhummy transfered me I would not be new and because of the government targets, I would have to wait longer!!!!!
:roll: , but its the system, not the docs fault, hes doing his best by telling me how to get round it. Thats MY rant, sorry, but maybe your in a similar position. I hope you feel better soon and get sorted. Can you change gps? Love Sue xxx

skezier

woodie wrote:

Oh my friend I don't know what you can do. A mate of mine tells me the more you kick the more likely you are to get sorted. That's so stupid, to be internaly refered should mean your seen quicker, not mean you wait even longer, it seems targets matter more than us eh? You have a GP who seems on your side, that will help. When this first started I had one of those, once he'd stoped telling me it was growing pains! and he pushed tests and stuff through as fast as he could. Mind it was a very different health service in those days!
I can't change doctors, Sue because they are the only ones near to where I live and I am outside the rests area. no matter how much I plead, breakdown and beg the rest wont take me on. I can't be reallicated one unless my present practice refuse to see me....... I guess till I sell here and move away from them I'm as stuck with them as much as they are with me!
Neuro apponitments can be daunting, I hope you have someone to go with you? If not try and find someone. Somethings are better not doing alone. I really hope it goes well for you and happens soon so you don't spend too long in limbo.
What I would like to say is (apart from don't accept the donkey) neck OA, Spondylosis etc can and does do strange things to your whole body. Mine turms me into someone with all the outward apperences of a drunk. I don't have cord presure I have a lot of perifiral nerve damage and trapped bits, but my 3 brain scans were clear. So please try not to worry. Oh and never let anyone tell you your a fraud, you are not! I hope you don't get that but it happens from friends and family who don't mean it but can't cope.
Take care, cris

nearlybionic

Hi Cris
I`m sorry you are having such a battle with the drs etc.. We are always here to listen when you need to sound off!
I know how frustrating the"system" can be, the good old `Choose and Book` system which pretends to put the patient in control!! What a farce!! Direct referrals would be far more effective to the patient but who cares what we need eh? Choose and book just hides waiting times and makes the government look good. (not to me though!)
I hope that you weren`t given too much pay back last night, well this morning!
Nicola

petmad

Oh Cris, there speaks us all, I have just had the same rave over on the Scottish Forum. I have got to the stage when I am having to cancel one appointment to make room for surgery etc.

I am still a relatively new member here yet immediately felt that I knew everyone very well as we seem to live the same lives.

You come on and rant all you want!! What else can you do at home among friends, Linda

skezier

nearlybionic wrote:

Hi Nicola, I promisis I wont rant too often but I'm sorry your having problems to. You know I looked into the right to choose, cus here we don't have a choice, it doesn't seem to exist. I always thought it was under the patients charter.......... I couldn't find that either. I did just for a laugh look to find the doctors duty of care thing as I thought mine might like a copy!
I didn't get my pay-back from the lower end as I was so wound up I didn't relax but I did give it a bit of an easy day today, it's got to do a full days work tomorow but don't tell it please! My neck and I are in stale mate over pay-back!
Hey on your post bout the 'lovely' lady if she ever says anything again just ask her where in the highway code does it say big vehicles are exempt from cutting cornors. I don't know which is worse her rudeness in asking you to move or her opening your door. She clearly can't drive either way!
Any way you look after your self, don't let anyone put you down and stay warm, Take care, Cris.

Hi Linda, You kinda supprised me as I thought Scotland had a better health sytem than we have. Again it is wrong, and your right it is widespread. I was talking to a mate and they have the same problem where they are and its yet another health trust!
I can't believe they make you choose surgery or appontments, how short sighted is that! I have to choose sometimes between a drip and a OPD apponintment but it's easy for me as I know it's not the Rumo dept as they arange the drip and the other consultants really will just reach for a tail and blindfold!
I agree they are a nice lot here, I needed to understand what my neck was up to and I really didn't know how to fight it as it has to do (realisticly) at least 6 more years. They were using different names but turns out its 'just' a kind of OA. I know how to fight that and sooner or later my neck will learn.........
You stay warm up there, take care, cris

jeannie2

Hi Cris,
No - I won't forgive you for ranting. Rant away, lass - it'll do you a power of good. I'm just about to join you. Stress is our worst enemy.

I must go to every clinic God ever created .... and they all want to operate! I have come to the conclusion that the NHS needs a complete revamp. It needs to become the healthcare organisatiion we all signed up for, taken out of the political arena and the research environment.
We all know that medical students need to be trained BUT I am beginning to feel like a laboratory rat.

I would like to know from our Government how much money they rake in from foreign countries for training their medical students in our hospitals - which were intended to heal UK residents who are ill. It's also time the medical profession were paid a wage, like the rest of us, and this 'fee earning' regime came to an end.

Our hospitals have become part of the universities and we are the learning fodder. The 'real' Consultants work in the private sector and only 'oversee' the people we have to see because we can't afford it. We wouldn't be accepted if we could because we have a serious existing condition. Does nearly 50 years of contributing to a system not entitle me to some decent treatment and a civil tongue?

I know this is inflammatory but it's also true. It's time the 'powers that be' understood what we have to put up with .... they just don't know! Do they care?
And now I have to apologise for ranting and, some may think, being cheeky.
Jeannie (the other one)

woodbon

woodie wrote:

Gosh, I think you've just said what a lot of us feel at times. I have oa in my spine and neck and it is very painful, so I can see where your comming from. The pain makes it harder to take and making lifesyle changes can be easier for some than others. If this had happend to me a few years ago, when times were harder, well, I don't know how we would have coped.

Being shoved around from department to department, which is happening to me at the moment, is worrying and the way the system works is just plain silly. My rhummy has to discharge me and write to my gp recommending I be seen by a neurologist and my gp has to refer me as a new patient. That way I get a quicker appointment. If the rhummy transfered me I would not be new and because of the government targets, I would have to wait longer!!!!!
:roll: , but its the system, not the docs fault, hes doing his best by telling me how to get round it. Thats MY rant, sorry, but maybe your in a similar position. I hope you feel better soon and get sorted. Can you change gps? Love Sue xxx

skezier

jeannie wrote:

Hi Jeannie,
I can't help thinking you put it better than me with my donkey! It sadly has touched some nerves, I wonder do any of us actually get diagnosed beyond 2 conditions? I am sure its down to the trusts in charge of the hospitals, and their bugets or how they spend them. Mind I don't know if the ones who didn't go to trust's are any better.
I know what you mean sometimes you just find it all going into some huge great rant! Ididn't plan the donkey rant, I was doing a nice quiet enquiry to see if anyone else had the consultants play pass the parcell and suddenly this huge wave came in and I just rode it! I was quite amazed at just how fast I could type and it was one draft! I did edit some around the doctors practice because I really did lay in to them!
From this site I have learned I'm not getting lazy! I didn't know OA makes you worn out. I didn't know that my repeted low grade fever could be the OA, I thought I was just run down and narrowly escaping flu. I didn't know much and yet I've had it more than half my life. I have a lot of blurred vision, I read somewhere that could be down to the neck! I didn't know why I kept dropping thing, yeah ok it makes me sound stupid! I didn't understand what it does I honestly thought I was just becoming clumsey and lazy. So my thanks to you all here and the info pack ARC sent as it helps.
I hope you all stay warm and I said I coped with my lower spine OA by putting it in a hamster ball but wasn't sure what to do with my neck....... I decided today its a 3 year old child in there aving tantrams! I wonder if I can reward train it.......
Take care and stay warm! Cris