# Checking in, and a realization/mini-rant



## M&M (Jan 20, 2002)

Hey everyone!I hope everyone had a nice day today, whether or not you did the Turkey Day Celebration. The weather was pretty nice here, just coooooold!Just wanted to take a moment and check in with you! I had a frustrating experience today, which I should be used to, but when it happens with new people itâ€™s still frustrating, even though itâ€™s happened a million times before. (If that makes sense.)xxxxxThough, I must say that I am so fortunate to have so many people who DO understand â€" all of you here, and another good friend who has PPS. It just struck me today. Iâ€™m in this for the long haul, all by myself. And as an â€œold-timeâ€ with this illness, I was surprised that realization surprised me so much!Other than that â€œlight bulbâ€ moment today, and being in a flare, Iâ€™m doing ok. Iâ€™ve watched 3 movies lately that I enjoyed â€" X Men III, Nacho Libre, and Poseidon. Though Poseidon was a little TOO suspenseful for me. I actually felt drained after watching it! LOLAll my pets are doing well, and life in general is pretty much the same â€" which is just fine.Check in when you get a chance!(I didn't mean that to sound complaining, I hope it doesn't. I was just surprised that, even after being so sick for so long, there was still something that surprised me about it.)I am sorry to edit my post so much! But the need arose to edit it, and am hoping the thread will still make sense!


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## Clair (Sep 16, 2000)

Hi M&M and everyone 







Totally understand how you feel M&M, I had a similar experience just recently with my boyfriend. I told him I didn't feel so well, he totally shrugged it off and said "You always don't feel well" as if I'm some kind of complaining malingerer I was quite taken back by that. No sympathy, no support, nothing. I also bit the head off a colleague at work who thinks acupuncture and eating a vegan diet will cure my ME







apparantly if I just believe it I will be cured.....needless to say the only pins that will going anywhere will be in the voodoo doll of said colleague







Weather here is cold, rainy and depressing so it's a struggle to get out of bed and motivate myself.....When I eventually reset up my dvd player and tv I have a few DVD's to watch, war of the worlds, memoirs of a geisha and flight plan...so looking forward to those. I have a novel which I'm reading as well when I get time by Diana Gabaldon, A breath of Snow and Ashes....I've read all her others in the series so when I get some time I'm dying to know how it all finishes.Crawling under the duvet now....hope everyone else is ok.....


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## hope* (Aug 1, 2005)

Hi M&M,Clair and everyone







Yup i get what you both are saying, ive given up on my doctor for now and just deal with the pain and tiredness (spl?) as best as i can, my counselling is going good and i'm still doing the computer course, missed last week's lesson because my daughter was unwell, never mind. Spent last weekend at center parcs with the family, had a good time and we didnt hire bikes this time, i knew my joints were not up to it,and our villa was nearer the pool and shops, so i didnt have to far to walk.My kittens are doing great they are 5 months old and keep me busy and on my bad days they cheer me up







IBS still a pain trying to deal with on a daily basics







So that's my news it has been a while, take care everyone xxx


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## 23327 (Apr 3, 2006)

The thing I get most frequently (because of all the spinal surgeries I've had) is: "wow, I would have thought all those surgeries would have fixed you right up!"Like that is the reason for all my problems! DUH!! They just don't get it. They are totally separate problems. Yes, my spine is deteriorating, but THAT is not the reason I feel like garbage most days of the week. That is not why I'm on 10+ meds/day. It's the fibro/chronic fatigue and myofasical pain that wipes me out, makes me want to crawl in bed, and never be amoung the living!But we have to just chalk it up to ignorance. Most people would rather not know what they don't have to. After all, if it isn't part of THEIR world, why bother?? AND, if you are, in any way, a distraction or a hinderance to them, God forbid you be sick all the time! They can't comprehend it.After fighting all this for almost 3 years, I've learned, in most cases, just to let it roll off my back. I've also really isolated myself from most people, too. Sad, isn't it??


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## M&M (Jan 20, 2002)

Well, it's nice to read other people's horror stories. LOL Not that I wish horror stories on anyone, but at least you know where I'm coming from, and have had similar experiences.It's weird, because I've been dealing with it for so many years...But I guess there are always still surprises.







Miniwinnie,I don't recall seeing you in our forum before, so welcome!







I hope you enjoy being here with us! (And if you've visited our forum before and I've forgotten, I apologize for my brain fog!!







)


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## SteveE (Jan 7, 1999)

I come at this thread from a different point of view. I don't have fibro (my wife does), but I do have IBS. I was poking around in the fibro section looking for help for her, but after reading this thread, maybe I need some help too in knowing what to do about asking her how she's doing.I know that I've snapped at her at times when she's asked me how I'm doing if my IBS was in a particularly long and frustrating flare-up. She snaps at me sometimes when I ask about her aches. Other times, she says "fine" in a tone of voice that clearly indicates she's not telling the whole story. When I follow-up by pointing-out her insincere tone, she says "it doesn't do any good to complain." The bottom line for me is this: the shoe is essentially on the other foot now. She didn't know how much to talk about my IBS or what to say or ask. Now I'm in that position. It is a very frustrating position when it's someone you care about so much. You want to understand what they're going through, but after getting the same answers to the same questions, you stop asking or stop talking about it. Occasionally it gets so frustrating that I've said something like "you never feel good" too. Should I have? Of course not--especially since I should be extra sensitive to the situation as an IBS sufferer. So why did I? Maybe I've run out of people to express my frustration with her problem to. She doesn't like to talk about it much (as is evidenced by the "complaining doesn't do any good" comment). So I guess I'd suggest a more open approach. Don't wait for them to ask if you need to tell someone how you feel physically or emotionally. The frustration will build to a point where it comes out in the wrong way.


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## M&M (Jan 20, 2002)

That's very insightful Steve! And a good reminder.Dealing with chronic problems is difficult, and tricky, and a bit like trying to defuse a bomb at times! lol It's nice to hear different points of view!


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## M&M (Jan 20, 2002)

Steve,I'm still thinking about what you said! And it has been an eye-opener for me in a very real way.I've ALWAYS been aware that I don't talk enough about what I'm dealing with to the people in my life who have no clue about it.And I'll tell you why. And, it might even be the same reason your wife doesn't talk about hers enough either. (And might be your reason too!)When I'm feeling kind of ok, I honestly don't WANT to talk about my problems. Because it's a downer, and when I'm feeling kind of ok, I like to live in that moment, and pretend for a little while that I'm not really sick.Then, when I'm in a flare and feel really bad, I don't talk much about what I'm feeling either. But, in this case it's because I just don't have the energy. I've found when I'm in a flare I can very easily snap at people, because I just don't have the resources to talk nicely. And I certainly don't have the resources to explain what I'm going through.Maybe, instead of pointing out her insincere tone, a different approach might work a little better. For myself, when that happens, what works to break down my anger and snapiness is when I get a great big hug. And to be told, "I know you're not ok, and I know you're plugging along anyway. I'm proud of you for that." Or something similar. When I'm in a flare, a lot of good love breaks down my defensiveness.I don't know if that helps or not. But what you said has stayed with me, and I feel more determined than ever to not let myself get to the boiling point. I had been hoping to come up with something equally provocative and helpful for you, but not sure if I was able to.







I think this is advice that will work VERY well with the people I am especially close to in my life. And maybe, if I can let them in just a bit more, weird reactions from strangers or acquaintances won't hurt (or matter) so much.It's made me especially thankful for each of you here.


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## Guest (Nov 30, 2006)

It's funny how "bad" reactions from different people can affect one.I've developed a close friendship with someone in my grad program, and I'm finding it difficult that she obviously can't deal with my CFS. We talk about lots of very personal stuff (religion, politics, all that) with no problems, and yet if I happen to mention something is going on with me fatigue-wise -- which I only do if it's pertinent, like explaining why I missed class -- she's always there with a "oh yeah that happens to me too." And it makes me nuts!Yet, when I told my future sister-in-law about the CFS just yesterday, and she suggested this sheepskin thing you can sleep on that gives you a better night's sleep, I just laughed it off. (Even though she has an autoimmune problem herself and should know better!)I guess expectations, high or low, can either help you through or bite you on the butt!







It's been rough here lately too, but good at the same time. I'm still new to all this so lots of changes are being made and I get impatient at times.


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