Sometimes I get so irritated with trying not to offend someone while that someone doesn’t give a fig about my sensibilities. My family is filled with people who are quick to take offense at the slightest thing, for instance were I to mention I’d like to buy some car accessories, someone would say "You think my car is crappy?" Um, no, I didn’t even mention your car and am, in fact, thinking solely of my own, so don’t feel bad. I don’t know if it’s a cultural thing (another young lady from this neck of the woods blogs and I’ve seen her take offense at pretty much nothing) because there’s a lot of suspicions in my part of Appalachia or if it’s just me.
My issue is my illness, of course. I’ve mentioned a few times that I have issues getting people to understand the extent of it. Since no one can see that I’m in pain they think I must not actually be in pain. The same holds true for my fatigue. Well, almost because I generally look very tired when I’m dealing with that. It’s incredibly frustrating for me to deal with their attitudes toward my illness especially because I’m always explaining to them why I’m not talking about them and not dropping hints and not even thinking about being offensive toward them. When I discuss things with them I am using hidden meaning and double. I’m simply discussing things. So I spend a lot of time easing their minds and experiencing none of that from their end.
I should explain that by "them" I am, in fact, talking about 3 people in my family: Grump, his mother and my mother. Grump and my mother are especially frustrating because every time I say something they jump to conclusions. I think I chose to marry Grump because he’s so much like my mother (they used to say women chose spouses that are similar to their fathers, but I’ve never known my father) and it’s something that chaps me way too often.
Back to my point. Last night my mother was over and I wasn’t feeling very well. I was actually suffering from cold chills and fatigue. It wasn’t that I didn’t want her here, but I was ill and just wanted to lie down and watch "Monk". Considering that she is in a position where she doesn’t have access to a television I thought she’d like to join me. Well, Grump said something she didn’t like and then went upstairs, so she immediately went on and on about him. When he came back down, she just gave him the silent treatment. This isn’t necessarily something I really care about, to be honest, because I’ve been dealing with their strange relationship for years. Grump then got offended and went back upstairs to stew. The tension was thick and it irritated me to no end. I told my mother that I wasn’t feeling well and could she just ignore Grump "for tonight". She immediately went on a tirade about how if I didn’t want her there she would leave. I told her I wanted her there and would she please stay to watch the show. She calmed down. But, apparently, she didn’t forget.
A little while later I told her I didn’t want to sit on the front porch because I wasn’t feeling well and just wanted to lie under the covers on the couch. Then I spilled soda on my shirt. I said "I’ll be right back. I’ve got to change my shirt." Don’t you know she left the minute I went upstairs? I was walking back downstairs when she was turning her car around. I said to her "You’re just going to leave without telling me?" It’s something I find incredibly rude because, well, she taught me it was rude to leave without saying "Good-bye" to your host. She said she thought I didn’t want her there and that’s why she was leaving. I was so angry. I didn’t even bother to say anything else. I went back inside. I’m over it. If she wants to be offended, well, there’s nothing I can do about it. I won’t hear from her for a couple of weeks and then she’ll be back (usual story).
It’s funny that she made assumptions about my "illness" (they always emphasize "illness" as if it’s not real, which chaps me even more) yesterday. She should know me right? You’d think she’d know when I was being crabby and secretly wanting her to leave, because, well, I’d tell her I didn’t want company. Grump and my mother both know I’m particularly outspoken about certain things. They know there are no hidden meanings behind what I say. Whatever. But Grump’s mother I will allow that maybe she just doesn’t "get" me.
I would appreciate some actual concern from those that I care about the most, especially when I’m not feeling well. I’d appreciate my mother not being offended by every little thing I say. I’d appreciate my husband getting to know me well enough to know that when I say “I’m cold” I’m not saying “TURN OFF THE AIR” (because I would just say “turn off the air” if that’s what I meant). I’ve even told both of them that they are too easily offended. I’ve explained to both of them that it’s hurtful when they question my illness and symptoms. I’ve had those talks with them as if they’re children to whom I’m explaining “the birds and the bees” and it’s not helped. It doesn’t help when I lose my temper either. I think, maybe, there’s just something about me that puts people on edge. I don’t have any other explanation for it.
I can be acerbic at times when I’m truthful. I’ll admit that. Which makes it even more confusing because my people know that when something is on my nerves I’ll just say that something is on my nerves. I don’t dance around the subject. I don’t “drop hints” and hope someone picks them up. That just leads to more of the same. I’ve learned that through therapy. But maybe my therapists (and Dr. Phil) don’t understand the psyche of the perpetually offended/paranoid. I don’t know.
I know that it seems like a cultural thing, because when I lived in another part of the state (just one county up) I didn’t have the same kind of problems communicating with people. And they didn’t have problems communicating with me. I think living up there showed me a different side of people and tainted me to the people that have lived in this county for their entire lives. It’s stressful, but I’m not giving up. I’ll figure out a way to communicate my needs and get them to recognize their offensive actions. One way or the other.
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Be Wary of Claims of Fibromyalgia “Cure”
I’m so irritated. Today I was surfing YouTube looking at videos from Fibromyalgia sufferers and, sadly, came across a few that were promising cures (some in “just a few weeks!”) and giving false hope to real people who really suffer from this debilitating disease. The worst, I think, is the “doctor” (I don’t know if he’s really licensed or not) who offers a discount for patients to come to his clinic to get “diagnosed and treated”. The second worse is the lady that claims that FM is just a build up of toxins in the body that can be “purged”. Research into the “purging” lead me to find that the technique—or Protocol—for the purging was ongoing and that if the patient were to stop then the FM would suddenly reappear. I’m pretty sure that’s not a cure by any means.
The thing that these folks offering “the cure” for Fibromyalgia forget is that it’s not all about the pain. Yes, the pain is a significant part of the disease and it is what generally gets the patient into the doctor initially. The pain makes it difficult to get around and be physical and can cause severe and chronic depression (which makes the pain worse which feed the depression, which…). However, to “cure” FM you’d have to go beyond the pain, because most of us who suffer with it have more than just the pain. None of those offering up the miracle of an end to our suffering seem to take that into consideration. Sadly, though, it’s the pain that makes people throw their money away on these types of
scamscures.The pain is horrible. Don’t get me wrong about that. I hate the pain. But I think it would be more endurable if there weren’t the other things that go along with it. I don’t know if that’s true, of course, because we can’t find that out (as we’re all a list of symptoms, unfortunately) but I think for me it would be better. The pain, though, is not from toxins, studies have shown that it’s a central nervous system condition—that are brains are short circuiting and sending out pain signals constantly. It’s something in our brains.
One woman, whom I won’t name, claims that she’s suffered from FM since birth, but she’s been cured by this “protocol”. She explains her pain symptoms. She explains the tender points. She explains her “good days and bad days”. On her good days she goes surfing and bikes for miles. Since she’s started this protocol she’s miraculously better. Just take this medication, drastically alter your diet and if you’re especially strong you too will overcome FM and live a “normal” life.
When she explained her suffering (due to the “toxin buildup”) she never once mentioned sensitivity to sounds, smells, chemicals, lights and/or touch. I’ve spoken with a number of different folks who have FM and we all are highly sensitive to something like that. These things trigger different reactions in us and the sensitivities are part of the disease.
She doesn’t mention any digestive issues. Many of us have IBS in some form or another. We have to be careful of what we eat normally especially because of that. Other people have bladder issues on top of that. It’s humiliating, but common with FM.
She doesn’t mention a very big issue: Fibro fog (cognitive dysfunction). We struggle with short-term memory loss, unable to find the proper words, forgetting important dates and, sometimes, forgetting where we live. This is an incredibly frustrating aspect of the disease because we feel like we are, quite literally, losing our minds. For me, it began before I started any kind of medication and slightly improved when I started my high doses of Vitamin D. I still suffer from it. I still trip over words in a conversation or stop writing so I can find that one word—sometimes hours later. I still forget how to do routine tasks, things that should be ingrained in my brain and automatic. And if you research via Google you’ll see that I’m not the only one who deals with this. And yet, this person who is cured, doesn’t mention it. Why? How can you discuss your suffering with FM without the fog? I can almost see the other things, but that? I became doubtful of her claims when I realized that she never even alluded to the fog.
Other things that these
scam artistspeople leave out are the Sjogren Syndrome, restless leg syndrome, insomnia, twitching, the skin problems and irritability (due to all of the above, obviously). There are reasons why it’s called Fibromyalgia Syndrome and these people are don’t get that. They’re feeding off of the desperation of people looking for relief from the pain (which itself is bad) and those people don’t think to look for truths in their spiels. Those truths can be found by examining what isn’t included in the symptom list and which symptoms are “cured”.I looked at that doctor who offered a discount to people who flew to his clinic to get diagnosed and treated and almost gagged. Here is someone that will most certainly diagnose anyone who comes to his clinic with FM—though there are no specific tests for it. No doubt he will make money off of people who don’t have it (but whom received his diagnosis) and then “cure” those people. They would believe him, of course, and tout his treatments as effective. And people who have the disease will become hopeful and fly to get help—only to be disappointed once again.
If you suffer from Fibromyalgia—or any other chronic pain condition—be especially careful of the scam artists that want to get rich off your suffering. Much like you would when searching for life insurance, do the research, listen closely to what they say, check them out thoroughly before giving your money. I know how bad you want relief because I do too. Sometimes I can’t even stand to breathe because I’m suffering so. Sometimes I just want to give up because it seems to have taken control of my life. I know how you feel. I’m there with you. But there are people that want to cash in on your suffering and don’t care if you’re actually “cured” or not. They know that we’ll do almost anything to get back to our real lives. Be so very careful of these people that offer miracle cures for a disease that isn’t even clearly understood by actual science. Don’t become a victim of those feeding on our suffering.
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