Hi everything - good morning! I woke up this morning with horrible spasms in my lower back, very sore on upper back, near shoulder blades and sore hips, I am limping so badly right now and can't breathe properly because of the fibro pain in my chest. What I wanted point out is, on some days, my friends may see me feeling pretty good, in a good mood and moving around. with just a slight limp I have been limping for years. What really bothers me, is, if these friends should see me again the next day, or a week later, I might be in a lot pf pain, and they see what it looks like when I feel this way. I might be bent over a little, balance problems, and so on. They just don't understand how I could look so miserable and in pain, when just a few days before,. I was moving around fairly good. I can't tell you how frustrating it is to try and exlpain my Fibro. This statement I made, is what SO many people don't get! I just tell them, that my Fibro comes and goes. This IS the truth. I can see why they would be skeptical. But, I can't worry about it and I just move forward with my life. In response to that woman that posted she has had people tell her she's 'walking too slow' really makes me angry. I have had comments as well - usually young people and I tell them off, if I have to. However, the first few time this has happened to me, I had tears in my eyes. Thank God I had my sunglasses on!! (Smile). I try very hard to be positive, telling myself there are people far worse than I am. But, sometimes, this doesn't doesn't work, especially when I am in a lot of pain, like today. Have any of you experienced what I have gone through?? If you have, how do you deal with it. When I get insulted about my illness, I DO talk back, but I don't use 4 letter words ( this won't get me anywhere!!) Most people back off and just leave. I would love to come back at them with a really awesome answer, but I can't think of any right now. Thanks to all of you for giving me such great support and advice. HUGE hugs, Laurie
Hi, Laurie!
I don't get so much as people saying that I'm slow, but I do get people who pass me at college and look back at me with a look of "Get out of the way." If I could, I would pop them in the back of the head really hard. I'm 36, so these kids are wayyy younger than I am. Really, the only person that understands my pain is my boyfriend. I've told my dad and sister. Never do they ever ask me how I am doing. It somewhat hurts my feelings, but, at the same time, I know they can never understand how bad it hurts because they don't have fibro. Still, one would think they could offer to help me or show some compassion. I can imagine at some point someone with have the gall to ask me what is wrong with me or insult me. I understand why you cried. Some people deal with it that way. Knowing me ... I will probably try to tell them and if they don't understand or try to continue to be mean, then I will wait until one of my good days and make their day really bad. Just know you have friends here who understand EXACTLY how you feel. These so-called "friends" you talked about don't sound very supportive. My advice would be to find someone who understands how you feel. They, in my opinion, do not sound like real friends at all. How I deal with it? Knowing that I will get them back. LOL! Karma can be a b*tch!
Ha! Ha! Susan I loved the ending of your response to my discussion. I have a few good friends, and there are others that I chose to let go of - because they were very pushy - wanting me to go everywhere with them. I appreciated the fact that they wanted to be with me - but the lack of compassion and truly trying to understand what I am going through, just didn't happen. I can't be bothered with these kind of people. I am so sorry that your Dad and sister do not support you in your illness. We all need moral support as Fibromyalgia is really a horrible thing to go through.. I woke up this morning SO sore! My chest hurt, along with the shoulder blades and hips. It eased up just a little bit as the day went on. This is a perfect example of us not knowing when it's going to hit us. So, on occasion, I have had to cancel things when I get sick. This is what my 'friends' couldn't understand. What is so hard to understand here???? I am sore and don't feel well. This should satisfy there question as to why I can't go out with them. They just kept pushing. It really upsets me when I feel like I have to explain everything that is going on with me. I get tired of talking about it. They don't get it! Laurie
Hi Laurie, I know exactly how you feel… And this happens to me a lot, a family member or friend will see me and I feel ok, I call it , able to function somewhat, but then the very next day or next week, when ever , I have days that I just can’t even get dressed. I have learned to not schedule anything or make plans. It does make it hard, as there are times when I feel somewhat ok and it gets lonely , I find my self sticking to my self even when I may feel ok, because I fear that if I go do something with someone, I have to limit my time, and then they won’t understand that I may not be able to do the exact same thing next time I’m asked. It is so frustrating… I know that the only ones who really understand that issue, are the few who take the time to try and understand… Like my daughter, mother and sister - in law, other than that I don’t explain much if I have to cancel something or have to say no I can’t , to someone that doesn’t understand I don’t explain it. Usually I only make plans with someone that understands that if I have to cancel its not because I want to.
I often think to my self exactly what you said, if they could see me now… I get frustrated because people always say, wow you look good, you don’t look sick… That’s the toughest one to try and explain, and again I only do with those I know really care about me.
Hugs & blessings
dee
Hi Laurie,
YES, I hear you loud and clear...I get the same treatment..or I should say I got the same treatment...I can't stand it when ppl doubt me...and think I am faking...thank god Fibro was finally recgonized as a serious disease...and there are commercials about it..but before that...god it was frustrating telling ppl how I suffered with this damn Fibro...but you know what I did...I told my Dr. about it...and asked him to write out a detailed letter for me about my conditions..and how it effects my life...so he did..I photo copied it and gave a copy to each family member..and some friends who would say ~just get up and lets go hiking you will feel better~ ya right..I wish I could just get up and be out the door doing something...anyways...the letter worked...it shut my family right up...lol....maybe try that. I wish you luck...but try not to let them bother you...the truth always comes out in the end...and you don't have to justify yourself and your FM to anyone...I do know its hard not to let it bother you tho...but just do what you want...in solving this matter for you...so you can relax and get the stress of it off of you.
WARM HUGS
Jesse oxo
Jesse,
Having your Dr write a letter was a brilliant idea. I've heard of people who had business cards made with the symptoms listed on both the front and back. My own situation was unique. I was the typical college go-getter when my spine required seventeen months of bed-rest and ultimately a fusion when I was 19/20. My parents/sisters accepted this because there were doctors they my mother chose that all agreed that the fusion was the way to go. After I recovered, I was like a bat out of hell past college graduation and into my first job where I was set up to be a millionaire by the time I was thirty. I became a district manager in four months (before that, nobody had accomplished that feat in less than a year). Then I was introduced to Fibro.
Within the next six months, I had changed jobs so I could try and work from home, was unable to drive more than ten minutes or so (certainly not the 750 miles a week I had been logging in prior to FM), and when a flare hit, it would often take two weeks for it to resolve. My folks freaked out.
- Because I had a grandmother who showed signs of agoraphobia, I must suffer from agoraphobia.
- Because I was not sleeping at night, I must be "relaxing" too much during the day.
- Because my focus was no longer becoming a millionaire by thirty, I must be depressed, "probably even a chemical imbalance" claimed my mother who, at the time, suffered from (you guessed it) a chemical imbalance.
- My oldest sister accused me straight out at a family dinner of faking it for attention. Her exact quote was "If I had the same symptoms you claim to have, I wouldn't miss a morning of work, let alone giving up a lucrative job. That's just crazy." She would later on challenge my diagnosis. "Seriously, Marc? A diagnosis of exclusion? That's what you came up with. A disease nobody can contradict because you can't PROVE any symptoms." (as if I needed to prove anything to her)
To shut my mother up, I agreed to speak with her pyschiatrist over the phone. It was sad, really, as she was so vested in proving herself right. Of course, her doctor agreed that I was dealing with my FM quite well and that my folks should use the reference materials (from NIAMS @ NIH, etc.,) as an education to what FM really is and how they can support me.
As a rule, it is easier to feel sympathy/a connection with somebody who shows courage under fire by walking with a prosthetic leg, than somebody simply limping. For the longest time, I was envious of people with visible disabilities.
LOL - hey Mark - I am with ya!! It's just unbelievable what family think about Fibro, isn't it?? Well, like I always say, they need to be in OUR shoes for one week and THEN they can tell us whether we are faking it or not. Honestly, some people just get on my nerves about this!! DON"T get me started!! Hugs! Laurie