Desperation and Doctors

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Desperation and Doctors

Postby Withane » Wed Feb 03, 2010 12:16 pm

Hi folks

It is an AGE since I have been on the site, I think it's called denial. However I have been in contact with the GP and hospital, taking drugs, doing exercises, keeping a diary, pacing - and I feel (and have felt for some time) desperate. :needhug:

Saw the GP this morning, I feel "pickled" with the drugs; ranging from tremors, constipation, involuntary movements when resting, extreme night sweats, hallucinations, low...the list goes on.

After sharing my anxiety about seeing the GP and explaining my fear of NOT being taken seriously, my partner and I decided that I would write a list of the things that I am not coping with.

The GP said I was in a state/bad because I was focusing on the negative and not looking for positives in the news and in my life (which is NOT true), if I was just to be positive in my approach then the focus wouldn't be on any of my symptoms. I was asked desperately if there was any more to say because he had other patients....

I felt low before. I don't want to write the words I feel now - in case it is just dwelling on the difficult stuff. :?

I really hope I am not in a spiral of self pity, tell me please? :dunno: My consultant has previously asked me if shouting at me would help MAKE me pace my life more evenly? And my GP agrees and says he has read my notes, discussed them with my last GP and looked at my history - I need to focus on the good things.

I am DOING so much less - my life feels a half life. I keep a diary of the positive things every night and record how well I am doing....and don't write anything else.....just facts, drugs, observations, how much I exercised.

Like above - I am at a loss for words and for direction, I am drinking tea and mopping myself up to go and teach this afternoon at work....so am breathing in and out and asking to let it all go.

Writing here has helped tho. Thanks for being there - for being consistent - thanks for reading.

Anne x :wave:
Moving into acceptance about having FM - but that doesn't mean I like it!
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Re: Desperation and Doctors

Postby velvet » Wed Feb 03, 2010 1:28 pm

:hugs:

when will these idiots learn that if we did actually stop focusing on the good bits and focused on the bad stuff like they think we are we would never get out of bed!!

not to mention the fact that we carry that little devil on our shoulders telling us that really this is our fault and we could do better and the worst possible thing they can do is tell us that little devil might be right because the inevitable effect is we try to do as we are told and end up making ourselves worse.

maybe sometimes we need to give the bad feelings an hour or so, wallow in the misery so when we pack it all away we know that actually if we were giving into it we would be in bed useless not doing what we are.

wish i could do something else but have another hug :hugs:
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Re: Desperation and Doctors

Postby gillshutt » Wed Feb 03, 2010 6:59 pm

:grouphug: Anne, we are always here for you. Sorry you are having an awful time of it at the mo :hugs:
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Re: Desperation and Doctors

Postby Withane » Wed Feb 03, 2010 9:27 pm

Thanks Velvet and Gill

Both of you have reassured me;

1. The UK Fibromyalgia Forum is here for me when I need help (Denial or not!)
2. Just because I FEEL it is ALL MY FAULT - it doesn't mean it is
3. The "experts" don't always get it

And if the experts can make mistakes, then hell, I can too! :tongueout: :tongueout:

In all my desperation - I had to smile this evening :? :) When I got home and relayed the experience, my partner was incredulous and just calmly asked;

"And how much does he get paid for that advice? Hell- You should of walked out and complained about him!" :shock:

And that my friends is where we differ; he doesn't feel the "fraud" who takes up too much time and is making a fuss, then rationalises it MUST be all in her head! My partner says what he wants and gets what he needs - and if he has a bad experience he just walks away - he doesn't make it his mistake or problem! :crazy:

Do they do pills for that? :dunno:

Thanks for being there - AGAIN....thanks for your patience and comfort

Anne x :hugs: :hugs: :hugs:
Moving into acceptance about having FM - but that doesn't mean I like it!
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Re: Desperation and Doctors

Postby gillshutt » Thu Feb 04, 2010 7:35 am

I know the feeling Anne :( I am the same, you take things personally when you shouldn't and for some reason think that it's your fault when it's not :hugs: :hugs:
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Re: Desperation and Doctors

Postby ladymanvers » Thu Feb 04, 2010 10:42 am

It's a woman thing, taking things personally. I am the master (or mistress!). Not all women though, lucky things.

I detected a supercilious sneer from my consultant at the sleep clinic on Tuesday. Are you SURE you've got fibromyalgia he asked, WHO diagnosed you? The so-and-so (I'm using that cos I really want to swear and can't on the forum!) was implying I'd self diagnosed! I told him his Rheumatology colleagues name and he backed off but only a BIT! :evil:
.
But it's also a result of years of small slights and setbacks being misunderstood each time our illness only shows itself as a veneer of vulnerability:

If we had a skin infection it would manifest as an abcess
If we had a broken arm it would show on an X-ray
If we had measles we'd display with a rash...but NO!
We have MULTIPLE pains, sleep deprivation and crippling fatigue and it shows itself as us being slightly on the edge and exhausted!

UNFAIR, UNFAIR, UNFAIR :banghead: :banghead: :banghead: :banghead: :banghead:

Ju.xx :cry:
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Re: Desperation and Doctors

Postby Withane » Fri Feb 05, 2010 3:45 pm

Hi Ju

I couldn't have put it any better myself! :banghead: :banghead: :banghead: I feel SO like that regularly - with myself (I still have that "PULL yourself together!" voice telling me "It's mind over matter!") and usually after or during any doctor or consultant visit!!

You are exactly right about the doubting/skeptical/ condescending medical profession who are SO quick to imply that this FM thing is us being sensitive! :tongueout: Oh for a blood test, a scan, an x-ray or a series of infutable tests that PROVE beyond reasonable doubt - this FM is NOT in the mind!

Next time I feel slightly on the edge (if not actually over the edge and clinging on by fingernails :crazy: ) and I have someone tell me to be;

"positive"
"focus on the good stuff"
"keep pacing yourself"
"look on the bright side or
the best "It could be worse!".

I am going to smile sweetly - stand up - say nothing - turn my back and walk out. :clap: Whilst I feel torn with "staying in the system" to be well (What a carrot that is!) and my desire to tell all the "experts" to stuff it! I want to get to a place, when I can trust what my body says and act on it, with confidence! :hugs:

If I want to rest - I will!
If I want to eat - I will!
If I want to walk and/or exercise - I will!
If I want to sleep - I will!

At some point in this journey, I won't need anyone elses approval for me to live my life in an "acceptable way". That way will be the one I choose for ME!!

Thanks Ju - I feel inspired!

Anne x
Moving into acceptance about having FM - but that doesn't mean I like it!
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Re: Desperation and Doctors

Postby Mr.A » Mon Mar 01, 2010 9:59 pm

What a ducking punt! (The GP)

I'd be outraged at such incompetence.
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