Nice day but paying for it now.

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Regular Member

Date Joined Apr 2008
Total Posts : 184
   Posted 4/22/2008 12:34 AM (GMT -6)   
sad  Hi All,
  A tale to tell for all who care to read. I felt pretty good this A.M. pain level of about 4 which is pretty amazing for me. My Sister calls and asks if I want to come up she lives not 5 minutes from here and my best friend of 48 years was there also. So I decided to go. I knew I would pay for it of that there was no doubt. However my sis has been angry with me for not coming to her home to visit. She can't comprehend the effect it has on me and takes it personal. Things flare up but they also are mostly ok.
  I went and we all had a great time and I was there with my sis for over 2 hours. Then the pain hit me, I honestly had to grab a chair while she held me up for a few minutes. It was bad. I had to take my many pills and stay for another hour before I could drive home. I came home and hit the bed. Tonight moving is painful, being is painful, walking is past painful. At the moment I can't help wonder if it was worth it. How sad that is, right? It will be days before I'm anywhere near that 4 pain level and will be at the 8-10 level till than.
   I love my sister but the last time the situation came up about going to her home she said it was ok just don't expect to see her at my home. I guess I agreed to disagree, it's my way. I so
   I also could see the look of pity in her eyes when she realized how much pain I was in and I hate seeing people I love looking at me that way. So much pain and hurt in the eyes of the people I love.
Is this common for any of the rest of you and do you have any ideas on how to heal the rift in a more permament way without alienating my other family members? Anywhoo thanks for giving me a place to vent and be heard with out having to leave my bed. Love Peace and No Pain this is Toritoo and I am definitely out. Goodnight.      smurf   

Forum Moderator

Date Joined Jan 2005
Total Posts : 9145
   Posted 4/22/2008 10:50 AM (GMT -6)   
Hi Toritoo,

It's sad that our family some times just "doesn't get it". You would think they, of all people, would have compassion for our pain. Maybe they just can't handle the thought of a loved one being ill, sometimes they are jealous of the attention an ill person receives (seems silly but it's true), or maybe they just shut out all bad things in life. It's hard to tell, but at some level most of us want them to at least understand.

Below is a link to a story we talk about often on the fibro forum. It's called "The Spoon Theory". Since it's copyrighted I couldn't post but do have permission to link to it. It is referring to Lupus but it's very true for anyone with chronic pain. Print a copy of the story and mail it to your sister. It should at least give her something to think about. Having something concrete in your hands to read often has more of an impact.

Good luck,
Co-Mod Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

New Member

Date Joined Jun 2007
Total Posts : 16
   Posted 4/22/2008 11:38 AM (GMT -6)   
Wow!  She hit the nail on the head!  I don't have Lupus but now I have an understanding of how someone with it has to live their life.  She did a great job of explaining how anyone with a disability has to live.  It is truly sad that the ones closest to us oftentimes don't get it (or want to get it) on any level.  I have found over the years that if you are asked how you are today, that person really doesn't want to know...they only want to hear 'fine' and get on with it.  When I ask how someone is doing today, I REALLY WANT TO KNOW!  Thanks for referring that story for us to read. 

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 4/22/2008 3:49 PM (GMT -6)   
I can so relate to your story, as can many others on this board. I think that's why we're here - because it's often so difficult for others to understand. It's why many family and friends stop calling, inviting us...because so often we have to decline. I find myself wondering about what kind of chairs there will be at a place, how much standing or sitting I'll have to do, what the choices will be, etc., especially if it's somewhere you've never been. I love visiting my goddaughter and about 10 days ago decided to accept her invitation to come over for a casual dinner with her, her husband and 2 children (and her cat, who is a sweetie!). I usually decline, knowing I'll pay a price. But I didn't. Yes, I enjoyed my time with them, but yes, I also paid for about a week. She doesn't have hardly any good chairs that I can sit in, and then with the kids running around I forget myself and move rapidly (or they jump in front of you, like a 4 and 6 year old will do).

I also find it difficult because sometimes my pain doesn't show, especially if I'm only somewhere for an hour or so. I've learned to mask very well. So sometimes people think I'm doing ok, when they don't see me for the other 23 hours of the day. At least your sister got to see you in pain (not that I wish pain on you - you know that) so maybe she'll get a little more compassionate when you have to decline future invites.

Just know I'm thinking of you...


Regular Member

Date Joined Oct 2005
Total Posts : 183
   Posted 4/22/2008 6:42 PM (GMT -6)   
Toritoo :I'm sorry to see the effect that travel has to do with your pain situation.I too have a similar problem as sitting is my most painfull position and makes me 2 or 3 levels higher in pain than when I left the house if, I'm driving.I'm just talking small local trips to see friends.For out of town friends or family ,forget it.Anyway,I've found that if I can get a ride that allows me to lay back or down instead of driving myself, I can arrive and get home with way less of a pain hang-over to deal with for the next few days.My true friends realize this and don't mind picking me up so I can have a better time when we get where-ever we're going and after.For out of town trips to see family I take the bus so I can lay back and arrive feeling much better. I think for myself that the stress and tension of driving really aggravates my injury.I know there are times when I have to fend for myself but I try to keep the driving part down as much as possible.I hope things improve for you and may God Bless You with less pain...........Rod   

Regular Member

Date Joined Apr 2008
Total Posts : 184
   Posted 4/22/2008 8:31 PM (GMT -6)   
Ah thanks so much all. I mean I'm sad that you do know how it feels but it is good for me to have someone else that has been there to talk/vent to. Funny enough my sister just came by, I live with my mom due to financial reasons, so she wasn't here to see me but my mom. I told her I had a nice time yesterday and she replied in like and asked how I felt. There is no way to be honest about it with her so I gave her the, "I'll be fine" line as I limped passed her turning my frown upside down. My sister is a wonderful person and is loved by all that know her, including me. She will help anyone she can or who asks, she is a good person. I just can't get her to understand my situation. And I definitly cannot discuss this with her anymore as the stress is just to much for me and she seems to take it as a personal affront to her, my sister. So I'll keep on keeping on and do what I can to keep our relationship together.
It's strange because the rest of my family if anything is over supportive they go out of their way to make life easy for me and trust me when I say I've just had enough and I need to go to bed. Anywhoo, thanks again for your input and I'm out, for now. Toritoo
Oh yea Chutz I tried finding that site you suggested and I finally did find the site but no matter how I tried I could'nt get the Spoon Therapy story to come up on my laptop. I actually registered there in hopes of getting that way. I'll keep trying though. So thanks.    sad

Post Edited (Toritoo) : 4/22/2008 7:38:01 PM (GMT-6)

Veteran Member

Date Joined Jul 2006
Total Posts : 1123
   Posted 4/22/2008 11:00 PM (GMT -6)   


mosst people just don't get it.  my wife has survived two cancers with permanent disfigrement.  her probability for survival for 10 years is about less than me winning the lottery this week - i didn't buy a ticket which woulkd have marginally improved my chances).  our daughter and grandkids still expect my wife to take car3e of this that and the other thing. 

i am in constant pain 24/7 at a usual level of 5, rising to 9 several times a week.  i do things that i know will increase my pain, like dig a flower bed or week a flower bed.  it takes me forever to get the task accomplished and my pain level - well, let's jsut say it's always a 1 or 2 morphine day.  but i LOVE what i am doing and what comes from it.  the outcome is worth the pain to me.

is the outcome, or actrivity, worth the pain to you?  if not, maybe you had better reconsider your actions.  most people, even those close, just don't think or don't care.


That light at the end of he tunnel?  It's an on-coming train.

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