LIVING WITH a Chronic Illness

I wish they could walk in my shoes for a day
Then they wouldn't be so quick to say
"But you don't look sick .you're looking okay "
Then they give me that look as if to say
"You're not really ill, it's all in your head "
Well I don't care what they think: I'm going to bed
Having A chronic disease might make you feel needy
Having three of them makes you feel downright greedy
Water infections that make me feel drained
Have I taken my pills? Can't recall, fuzzy brained
My body thinks it's been hit by a tram
Am I getting the flu? No; it just feels like I am
My eyes and my mouth are screaming for fluids
I'm on more medication than I know what to do with
To read a good book was a pleasure of mine
Now the print goes askew by the third or fourth line
Two inhalers so I am able to breathe
Two red hands stemming from a liver disease
The itching starts and I tear at my skin for satisfaction
The men in white coats will soon have me in traction
Every muscle and sinew is ever so sore:
In fact I think I'll lie down on the floor
The soles of my feet feel as if they're on fire
A bucket of ice is what I desire
I've cleaned half the kitchen: and you know it looks grand
Now if only someone would give me a hand
To finish the job because my oomph is all spent
I don't know where it's gone
It just got up and went
Don't give me your pity: that's the last thing I want
Understanding and laughter are what I am after
Because they do me more good than any medicine could
So the next time someone tells me:" you don't look sick
You look rather well"
I'll smile very sweetly before I yell
GO TO ****

Hi Everyone.

Well after seven months of tests, x-rays & MRI scans my Consultant
has diagnosed me with chronic pain and referred me to a specialist
Pain Management Clinic at Frenchay Hospital in Bristol.

I've had a bit of a nightmare over the last four weeks or so.  The
Benefits Agency have refused me Incapacity Benefit despite the fact
my employer dismissed me due to ill health and I have no other
income.  Their superb system failed my application due to £36 in
unpaid NI contributions!!!!   I paid the outstanding amount and now
they say I have to wait six weeks before I get any money!!

I've applied for Disability also - as regular readers will remember
that I suffer with pain in my back and legs making it impossible for
me to walk without assistance - the Doctor came out to assess me and
I have to wait another six weeks for that decision also!

My regular medication has been changed recently also and that played
havoc with me too!  My wife will tell you, I was a pleasure to live
with for three or four days until I settled down and got used to it.

My daily concoction is:

3 x 50mg diclofenac
8 x 50mg tramadol
6 x 300mg gabapentin
1 x 200mg omeprazole

Anyway - it's Easter and I hope you all have a pain-free time and get
lots of Easter Eggs.

Take Care

Stu

Hi
I am new to this site and it's comforting to know  that there are other
people who share what we are dx'ed with .Fibromyalga .
   My name is Brenda ,I live in Liverpool and i was dx'ed about ten
years ago with this disease ,but because I was also dx'ed with Primary
Biliary cirrhosis of the liver and Pulmonary fibrosis ,I honestly never
paid much attention to this disease ,but now it seems to be taking over
my life .
  Thank you for being here
Brenda

Enter your vote today!  A new poll has been created for the
fibrofriend group:

How long have you had Fibromyalgia or Chronic Pain Syndrome?  This does not
necessarily mean the date you were diagnosed but the date the problems started
from.

   o 0 - 6 months
   o 6 months - 1 year
   o 1 year - 2 years
   o 2 years - 5 years
   o 5 years - 10 years
   o 10 years +


To vote, please visit the following web page:

http://uk.groups.yahoo.com/group/fibrofriend/polls

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

Hi Elaine

I have e-mailed you quite a long e-mail, which I apologise for.

May I welcome you to Fibro Friends and hope that you will find this
interesting.  I would suggest that you have a look at the website under
links and see if this is something that you have in mind.

I hope to see you at one of the quiz nights or meals soon.#


Nicky
Founder Of Fibro Friends

Hi all

Many apologise to those who I could not get hold of to let them know
the date changed from last week to this.  Due to Pete and I moving
house it made sense to do so.

I hope to see you all there later today.


Nicky

Founder Of Fibro Friends

Hi all

Just a quickie to see that everyone is ok.  Especially in the bad
weather.

I am having a pretty bad time myself with problems with a house sale
and moving house still at the moment.  Just like a normal house sale
nothing goes smoothly but this is chaos I feel like I am in a soap
opera at the moment.

Just to let you know that I have contacted Nottinghamshire papers and
some national papers and magazines to let them know about Fibro
Friends, on the positive side.  I am still trying to find a suitable
venue for the awareness event on May 12th.

Anyone wanting to contirbute to the newsletter needs to send me the
information via the website in the links before April 15th.  This can
be asking for help or funny stories to cheer people up.  Whatever you
want in your newsletter.  This newsletter is available online or via
post, (let me know if you would like it this way).

Anyway must dash.

Speak to you all soon.

Nicky
Founder Of Fibro Friends

Hi all.

Just to remind people although the UK seem to have an awareness day in
September that the international date is May 12th.

I am trying to arrange an awareness event in Nottingham for this date
and will keep you posted here about it as it becomes more firm that
this is going to be possible.

Thinking of you all.

Nicola

Hi all

If anyone has tried calling Fibro Friends this past week I wasn't aware
but there was a fault on the line.  I believe it is now sorted so if
anyone needs or would like to get in touch it is now up and running
again.

Apologises for any inconvenience.

Nicola
Founder Of Fibro Friends

Hi Stuart and Nicki

Welcome to Fibro Friends.  I have already contacted you through another
message board I believe.  But please feel free to chat to others and
have a look in the links at the website that is updated regularly.

Thanks for looking.

Nicola
Founder of Fibro Friends

Hello Nicola and everyone else!

My name is Stuart and my wife is Nicki and we live in Bristol - we
are two people in constant pain.

Nicki has suffered with FM & CFS for the last four years and up until
last year I was reasonably fit and healthy - then I was struck down
with chronic pain.

Nicki suffers from pain in her neck, shoulders and legs and I have
constant pain in my lower back and legs, especially my calves which
makes walking and moving around very difficult indeed.

I've just been laid off from work due to ill health and as I was only
there for four months I get zip! Nicki has been told to give up work
by her doctor and she is now on long term sick leave as well.

It would be great to interact on here with fellow sufferers - life
can really kick you in the nuts sometimes and we could all do with
some  support.

Regards
Stuart & Nicki

Hi all

I have updated the Links section with the website and now I have put in
the calendar dates for Fibro Friends meals and other events.  It may be
that here and the website might have dates that you were not aware of
or are in advance of the newsletter.

Have a good day.

Nicola

Hi all

The next newsletter is due out in early May.  If there are any
articles which you would like to have included in this edition they
need to be with me by April 12th so that they can be included.  This
could be funny fibro fog moments, serious new treatments that you
have tried and would like to share, etc.  You can either type them
out yourself, write them down and send them to me or even call me and
I will write it for you.

Another new item is that I hope to have a quiz every other month, but
if you have not sent stamps after this next newsletter I will not be
issuing paper versions so get your disclaimer forms and stamps to me
asap.

For those people outside of the Nottinghamshire area and would like
to recieve some more information for setting up similar groups in
their area please contact me.

Have a good day!

Nicola

Now the website is up and running I would like to develop this site for
you.

If you have any funny stories about fibro fog, etc or serious
information about treatments or new conditions linked please let me
know.

Also I would like to know what you think of the site too.

I hope you like it.

Take care

Nicola
Founder of Fibro Friends

Hi Yvonne

I am sorry to hear about you having been recently diagnosed.  If you
require more information please look at the website under links on this
page.  This may help.

Take care,

Nicola
Founder Of Fibro Friends

Hi all

We are now re-launched and i hope you give you lots of fibro
information in the future.

My new e-mail address is: fibro.friends @ yahoo.co.uk  (without any spaces)or
call me on 0115 929 9456.

If you would like to recieve the newsletter please send your name and
address and I will send out an info pack to you about joining our
social support group.

Thanks

Nicola

Hi

Just thought I'd make a comment about the news story yesterday about
the increased heart attack risk from taking ibroprofen and diclofenic
products.

As they stated in the article this was just a survey of patients from
doctors and nothing was looked into family history or previous health
issues just those who had had heart attacks after taking these
tablets.

As with all tablets there are some side effects with everything.  One
quote which was confirmed by a medical adviser on TV was that if
aspirin been up a new drug trying to introduced these days it would
not be passed.  I am sure those with heart problems know how
important a drug this is.

I would advise that if you are concerned you speak to your doctor or
specialist who prescribed this, for any further information or
alternatives.

Enter your vote today!  A new poll has been created for the
fibrofriend group:

Do you think doctors understand pain?

   o Yes
   o No
   o Unsure/Don't Know


To vote, please visit the following web page:

http://uk.groups.yahoo.com/group/fibrofriend/polls

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

Hello all!

Just to welcome you to this new group.  I am sure that this will
become a useful and friendly group for all sufferers of pain.

I hope this day finds you in a little less pain than yesterday and
this message offers some support to you in your search for help and
advice.

Please use this group.

Nicola