Jump to content



Photo

Everyone Is An Expert....


  • Please log in to reply
17 replies to this topic

#1 Amybc7

Amybc7

    Advanced Member

  • Active Members
  • PipPipPip
  • 81 posts
  • LocationVermont

Posted 19 June 2014 - 10:24 PM

Feeling a little frustrated tonight.

 

After finally explaining where I'm at to those around me, I'm now receiving everyone's two cents worth of advice.  

 

So.Over.It

 

I appreciate their input, but at the same time - it doesn't help.

 

I keep getting asked questions like "When is it going to be done?" and "Why can't you just stop taking them?"  I had an acquaintance tell me that she just stopped and was fine in two weeks (which I seriously doubt the accuracy of that statement).

 

Another told me just to finish since I was down to 20 beads (which some of you will note I've been stuck there for over a week now).  I tried to explain that actually one or two beads made a difference.  Yesterday I went down to 18 and was miserable.  Today I'm back up to 20 and a little better.  Yes - I hate it as well - but I'd rather take my time and not be ill.

 

Everyone seems to think that the medication is what makes me sick and if I stop it I might be uncomfortable for a day or two and it will be over.  

 

Does anyone have any great pieces of commentary?  Websites to share?  I'm kind of just ranting - but again - like so often lately - I just want someone to validate me.  Ugh.


#2 tria

tria

    Good Friend

  • Active Members
  • PipPipPipPip
  • 101 posts

Posted 19 June 2014 - 10:45 PM

Amy - I am with you here!  I lived for many years with mystery symptoms until I finally got a diagnosis in 2013.  So many people discounted my symptoms, or told me to try this or that, etc etc blah blah blah. My social circle is very small now, down to a few people who do understand to some extent what I go thru. And by understand, I mean they don't discount things completely but they still can't quite comprehend everything I go thru and may question if I'm just not trying hard enough. I've only told my immediate family and two other people (excluding docs) about the Cymbalta withdrawal and for the very reason you described!  I don't want to hear everyone's two cents.

 

I'm also right with you on the bead counting!  I'm at roughly 80-ish beads (since I weigh mine instead of counting) and I'm really having trouble weaning further down.  It is hard to comprehend that just a bead or two can make a difference, but it does!  It seems the lower I get on my dosage, the harder it gets and others here have confirmed that.  Don't you just wish you could magically put these people in your shoes for a while?  Wouldn't that be sweet?!  oh, how nasty is it to say that.... but I just wish people would be supportive and non-judgmental.  Why do they have to question everything you say?  What's wrong with saying "Wow that must be really difficult for you?" or something like that?  I don't get it. 


#3 tria

tria

    Good Friend

  • Active Members
  • PipPipPipPip
  • 101 posts

Posted 19 June 2014 - 10:50 PM

Amy and others - Google "spoon theory" - trust me here!  This is a great article written by a woman with lupus.  It's about how she tries to convey to her friend what life is really like with a chronic illness.


#4 GriffinsGranny

GriffinsGranny

    Newbie

  • Members
  • Pip
  • 7 posts
  • LocationSE TX
  • why_joining:
    Desperately seeking support, help, information to survive the worst experience of my life--getting off the Cymbalta I've taken for ten years.

Posted 19 June 2014 - 11:48 PM

Yes! Yes! Yes! I don't think even my closest friends "get it." I'm tired of explaining and frustrated that they appear to be frustrated with me. This is hell on earth. Thank God my husband is in it 100% and has told me we are in this together. I cannot sing his praises enough. Having one person in my court is a blessing, and I'm going to count that as my positive today, and EVERYday.

#5 Amybc7

Amybc7

    Advanced Member

  • Active Members
  • PipPipPip
  • 81 posts
  • LocationVermont

Posted 20 June 2014 - 09:38 AM

Tria - Thank you!  The spoon theory is amazing!

 

GG - You are right - so many people don't get it!  Thank goodness you have that support that you need.

 

My husband - who doesn't get it but tries (and I give him lots of kudos for that) said to me after I had a particularly "good" day - "So is that it?  Are we done with this now?"  Oh sweet hubby.....bless your clueless heart....  :)


#6 tria

tria

    Good Friend

  • Active Members
  • PipPipPipPip
  • 101 posts

Posted 23 June 2014 - 07:03 PM

Amy - glad you liked the Spoon Theory! I thought it was such a great way to show people what it's really like.  I'm glad your hubby at least tries to understand, I give him lots of credit for that!!


#7 GonnaMakeIt

GonnaMakeIt

    Advanced Member

  • Members
  • PipPipPip
  • 50 posts
  • LocationMA

Posted 24 June 2014 - 04:18 PM

DITTO DITTO DITTO!  No one NO ONE gets it!  I'm so glad I read this because I've been feeling the same and constantly thinking that I'm a burden.  What I try to say is that it is much MUCH worse than I even talk about because I do not complain about everything that I'm going through and will try to explain whatever is worst that particular day and end it with something like "I would not wish this on my worst enemy".  

 

I love this from Amybc7:  "My husband - who doesn't get it but tries (and I give him lots of kudos for that) said to me after I had a particularly "good" day - "So is that it?  Are we done with this now?"  Oh sweet hubby.....bless your clueless heart....   :)"

 

I am lucky to have the same type of husband but like you said, he still just doesn't get it.  How can they when we don't even get it?  The thing that I always loved about my hubby is that he is honest--painfully honest but now, not so much love for that honesty these days - hahahhahaa!  I think he has learned for the most part to keep anything with regard to the weight gain to himself but the poor guy does seem to be walking on egg shells a lot lately ;)  I was having an extra emotional day, lying on my bed staring at the ceiling with tears streaming down my face and he comes in the room and says "you look nice, the bed looks nice, I don't know what to say ..."  

 

Anyway, I don't know if this helps much (or at all) but sometimes, I will either send a link to one of these posts or compile a few and email it to them so they can see what we are all going through.  It kind of helps me a bit to send it to them even if I imagine them rolling their eyes on the other end ;)


#8 FiveNotions

FiveNotions

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 3,686 posts
  • LocationUS, East Coast
  • why_joining:
    I want my life back!

Posted 24 June 2014 - 04:57 PM

Oh my...so true, so painful, poignant, and yet funny....my one single cymbalta years friend, who I've written about elsewhere here, has been badgering me, via email because right now I just can't bear to see him and be badgered in person...about how long this is going to take.... I finally wrote him a long, detailed explanatory email yesterday....took me two hours to write, and I ended up shouting at him in it to back off give me room and time to heal, etc....he's a stubborn hard headed guy, and isn't even phased by me shouting, but it did seem to get through to him .....

He wrote back to me with a lovely response, affirming that he now understands better what I'm dealing with....

And he closed it by saying, "take all the time you need" ......"will you be ok by next week?"

{banging head against wall}

#9 Amybc7

Amybc7

    Advanced Member

  • Active Members
  • PipPipPip
  • 81 posts
  • LocationVermont

Posted 25 June 2014 - 10:34 AM

I'm looking to return to work next week after taking almost three weeks off.  I've negotiated to return part-time - afternoons - because mornings are just horrible for me physically and emotionally.  

 

My manager had insisted I update staff on my situation - something I'm not pleased about.  I was able to be vague and state that I was having issues withdrawing from a medication I had been on.  Out of 10 staff, one person responded kindly - the rest just read the email and moved on. It's so hard to convey to people that this is a big deal for me!

 

Bless hubby. On Monday I got up too quickly (balance is horrible in the morning) and fell down the stairs.  Thankfully I walked away bruised, some stretched muscles in my leg, and horrible rug burn on my backside.  What next?   :D


#10 FiveNotions

FiveNotions

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 3,686 posts
  • LocationUS, East Coast
  • why_joining:
    I want my life back!

Posted 25 June 2014 - 12:03 PM

Well, Amy, when you "update the staff," just turn around, lift your skirt or drop your trousers and show 'em your rug burn.... tell 'em that's how you feel inside, too....

That may even get you some more paid time off! ;-)

#11 TryinginFL

TryinginFL

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 6,158 posts
  • LocationFlorida
  • why_joining:
    Now that I have been off this poison for over 5 years, I hope to help others as they join us

Posted 25 June 2014 - 06:29 PM

FN....

 

 

LOL - I needed that!


#12 tria

tria

    Good Friend

  • Active Members
  • PipPipPipPip
  • 101 posts

Posted 25 June 2014 - 08:27 PM

Good one FN!! :D

 

Amy - Best of luck returning to work.  I've found the term "rare adverse reaction to a medication" to be useful at times.  People just don't get it anyway.  They are always sure that if they were in your shoes, they would do better.  I work at a very small office (only 4 of us) and my boss is great.  I work only 8 or 10 hrs a week, mostly from home now.  Before I started weaning off the Cymbalta, I was able to work at the office 2 afternoons a week but since then, it's been a real struggle. I've been there for 17 years and my boss is very understanding, which helps tremendously.  I had a lot of work to do today, and was very fuzzy-headed and my mood was not good.  I am just cranky cranky cranky!  Sorry, just feel like complaining a little and getting it out of my system.  I really need to take some time off work.  The problem is that everyone kinda has their own jobs and no one knows how to do anyone else's really well.  So even if I technically take time off, I'll usually get a call asking "how do I access this, etc".  I would LOVE a week or two off and think it would do wonders for my stress level!  Things have been hectic at work lately but I need to find time to talk to my boss about it.


#13 Amybc7

Amybc7

    Advanced Member

  • Active Members
  • PipPipPip
  • 81 posts
  • LocationVermont

Posted 26 June 2014 - 08:21 AM

Tria - I completely understand where you are coming from!  Complain away!

 

You are also so right - They are always so sure if they were in my shoes, they would do better!  


#14 gail

gail

    God-like

  • Site Supporter
  • 5,587 posts
  • LocationSherbrooke, PQ
  • why_joining:
    5 months on cymbalta, scary side effects, to get help and to return the favor if I can.

Posted 26 June 2014 - 11:00 AM

Hello Tria, I just looked up the spoon theory.

 

Loved it, and thank you.


#15 scared60

scared60

    Advanced Member

  • Active Members
  • PipPipPip
  • 77 posts
  • LocationNew Mexico
  • why_joining:
    Had a scary incident, now thinking of getting off Cymbalta. I came for advice, support and friendship.

Posted 18 July 2014 - 09:37 AM

I'm printing the spoon theory out ... also saving it and going to email to several people.  it's just sooooo accurate!  Thanks for sharing it!


#16 scared60

scared60

    Advanced Member

  • Active Members
  • PipPipPip
  • 77 posts
  • LocationNew Mexico
  • why_joining:
    Had a scary incident, now thinking of getting off Cymbalta. I came for advice, support and friendship.

Posted 18 July 2014 - 10:06 AM

Oh and by the way ... yea, NO BODY GETS IT.  I'll bet $1 that when my aunt reads the spoon theory she'll say, but this is about lupis ... chuckle.  I love my aunt ... for all my b%tching about her here.  I feel safe here and find I dump too much.  Others seem to contribute, me I just roll in my pity party. 

 

Oh my, gotta get outta that one!!!!


#17 gail

gail

    God-like

  • Site Supporter
  • 5,587 posts
  • LocationSherbrooke, PQ
  • why_joining:
    5 months on cymbalta, scary side effects, to get help and to return the favor if I can.

Posted 16 October 2018 - 08:22 AM

The Spoon Theory, interested subject.

#18 gail

gail

    God-like

  • Site Supporter
  • 5,587 posts
  • LocationSherbrooke, PQ
  • why_joining:
    5 months on cymbalta, scary side effects, to get help and to return the favor if I can.

Posted 25 February 2019 - 07:33 PM

The Spoon Theory, interested subject.


Just love the spoon theory!



0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users