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I am so angry and despairing after getting physio pain info

(7 Posts)
DoubleLifeIsALifeHalved Wed 13-Jul-11 00:38:49

sorry swear words to follow, seem to have reduced vocab as temper rose...

what a load of garbage and generalities and contradictory messages. Have sat here and read through a load of leaflets a specialist physio gave me today, and thought about her advice, and feel totally miserable and like giving up.

what a load of insulting nonsense. completely inappropriate, THIS is what i've been waiting over a year for?!?!?!?

I don't know whether to scream or top myself.

here are some gems... i'm sure very suitable for the usual layabout anti-social whiner with a few twinges... (? very convenient for policy makers to believe that their waiting rooms are filled with people who just need to be told its their responses to pain thats the issue?)

1. 'pain isn't a sign something is wrong'... oh, i do agree, i am not scared of pain or anything, but it IS actually a sign of something wrong if its telling you your collar bone has dislocated or your ankle has a hair line fracture, or your hip flexor is pulling your hip out of joint.... but obviously, i just need to 'manage the pain'... maybe 'barrel on through'? insert very rude swear word here. and while i am on the subject thats what they told my sister just before she DIED, unsupported, unbelieved and told she was making a fuss about nothing, brought it on herself for being an 'anxious patient', and that she wasn't doing her exercises and was uncooperative... excuse me if i am a bit sensitive to the 'pains natural' cr*p.

2. 'pain stops you doing things which is bad so you have to be more active '... except if you have no choice but to ignore the pain as a single mother of a baby and in full time work with no sodding support of any kind, still managing to do pilates and physio once a week by sacrificing sleep to do it. oh yes, being more active is just what i need...

3. 'its unreasonable to expect HCP to be responsible for your pain, you have to take responsibility for a plan'... which plan should i go for then, the get ignored by my gp for 8 mths even though i lost all mobility? be discharged with specialist with a list of 4 diff monthly tests to be done by gp... who has done NONE in the last 3 mths plan (and thats the good one I changed too after being ignored previously), or the wait forever for a physio specialist who tells me to do it myself pkan? which one huh? huh?

4. 'pain can make you anti-social and lonely go do something sociable, and combine with a little light exercise, like dancing'... its my DREAM to think about dancing, its about as far off as going to the moon currently, and no one is helping me get there, just telling me to sodding do it isn;t going to sodding help is it! and the other suggestion is 'go for a jacuzzi or a massage'... seriously? when exactly? how do i get there? oh yes, presumably on my sodding bike (see below)... leaving my 16mth old to hold the towel for me yes? whilst i am on a call to a client no doubt.

And then on the actual appointment itself... she says 'i will make sure you are seen by one of my team'... me 'hang on, the specialist said i should be seen by you specifically as you are the expert in the syndrome i have', well all my team are experts in related fields like XXX who is an expert in chronic pain' (i.e. not actually the syndrome i have then), me 'ok, what will i expect with the physio? i start to ask about various specific things like hips and ankles etc etc', 'oh we need to focus on lifestyle & pain management so lets not look at the details' fine... except the 'details' mean i can't possibly do what you are telling me to do... like pacing, or ruddy cycling or tai chi!!!!

i can hardly sodding walk, or get into a shower, or turn my head, or sit on a toilet, so let me just forget about all that pathetic whiney detail shall i and jump on a bike (with my baby behind me) and cycle off shall i?!

ok, objectively, i know i'll get over this in a few days and construct a plan of my own extracting a few things useful for me... but really, does it have to be like this? i just want SOMEONE to give me some useful help, someone to give me some realistic hope or a way out of this, a plan, something i can DO, not to taunt me, poke fun at me with all this 'helpful suggestions'.... i know i am being unreasonable, i know no one designed these things to rub salt into the wound, but it does, it really f*cking hurts, emotionally for a change rather than bodily

BoscoIsMyLover Wed 13-Jul-11 00:49:18

Do you mind me asking what is wrong?

DoubleLifeIsALifeHalved Wed 13-Jul-11 01:10:44

Ehlers Danlos, not sure what type yet, but my sister died of type 4 they now believe

BoscoIsMyLover Wed 13-Jul-11 01:13:15

I have systemic ra..I run a group for young people here inireland and actually a few have eds..its not an easy condition I'm sorry you are suffering.have you any support

DoubleLifeIsALifeHalved Wed 13-Jul-11 01:19:06

nope not a sausage - i mean not anyone (sausages wouldn't be very useful!)

am just so tired of having to fight and fight and try and make the best of things and i just thought i was going to get some actual expert help... not told to take up a martial art...

(whats ra?)

DoubleLifeIsALifeHalved Wed 13-Jul-11 09:00:14

Oh I am in so much pain today, talk about overdoing it yesterday, travelling to that useless appointment, right inner thigh seems to be pulled somehow & hips v sore. How will I walk today? Have the buggy so cant use crutches

skinnychai Wed 13-Jul-11 09:50:11

Hi double, really sorry to hear that you're in so much pain today and that you had such a bad experience with the physio. It sounds like you have a lot on your plate at the minute.

(RA is rheumatoid arthritis by the way)

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