Tuesday, June 25, 2013

How to support a pseudo-death - Chronic pain, parent's divorce, or break-up...

I have dealt with a number of what I call "pseudo-deaths." You know, like when your health ups & dies, your parent disappears, or you break up with someone after dating them for years & years. The problem is that society doesn't provide landmark events for these. "There's not an app for that" sort of thing. There is no funeral if your dad abandons your family. There is no fundraising & general panic if you have chronic but not-life-threatening pain. And there are no divorce parties if you break up with a long-time love. You just suck it up, and go it alone.

Because society doesn't validate these events as tragic, when it comes to supporting people in these categories, there are no guidelines to follow. So let me suggest one. If you are interacting with someone experiencing a pseudo-death, and you don't know what to say, check out the following list. This magic trifecta of verbiage avoids foot-in-mouth syndrome & prevents you from saying all kinds of landminey things.

Just try the 1, 2, 3 steps below...

1. "I am so sorry to hear that"

2. "How are you doing?"

If you want to be really great do what my boyfriend does & say

3.  How can I support you?" (See why I am with him?! He came up with this one all on his own.)

If you use these verbal support statements effectively, you will win the medal of support by your person in pain, because you provided grade-A service in earning the Relating to Pain (RTP) degree.

And in regard to all those things you would have LIKED to say but that weren't on this list? To quote me, "Be nice, not right." You can't go wrong with that.

Thursday, June 13, 2013

Party in the frying pan...Because what else can you do?!

Yesterday I realized that what I thought was a resolution on how to live with the psychological impact of chronic pain was only - an explanation. (Referencing my previous blog.) I was a bit annoyed to see this, because after more than 20 years, you would think I would have figured it out.

Compounding the issue, is that it is a bit like being a frog in a frying pan. Because you have to adjust at each change in your condition, you don't know where you started out. I know I certainly don't remember what it feels like to be normal or pain-free. It would be logical to conclude that if you want to analyze how to deal with the long-term impact of pain, that you would at least understand what that impact is. No such luck, since you are frying-panned. So the logical starting place of realizing where you're at, is pretty much impossible. And don't they say that realizing your condition is the starting point to improving it?

I am not sure that there ever comes an acceptance of chronic pain. I'm not sure it would be good if you did accept it - Because then you would stop fighting it. And fighting it is key to improving your condition. It sounds like people who lose limbs and the ability to do certain things come to an acceptance of their condition. But I have not heard these people say they suffer chronic pain along with their loss of mobility. Perhaps they do, and I am just not aware. Which begs the question, if I had to choose, would I give up a limb in exchange for losing my pain? I absolutely believe I would. But I can't try and see, unfortunately. Not that you can't remove my limbs, but that my pain would not go away with that.

I believe the loss you suffer when you lose your health, and you get chronic pain, is too big for the body and mind to process. The problem is with many of these types of pain, is that they are man-made. They are not the result of your body breaking down naturally, therefore it cannot repair itself naturally. I think the body's inability to fix itself is unusual, and the body and mind cannot process this problem.

Heck you can even recover from cancer. But not from chronic pain. So if you wonder why those of us  who have it are pissed off, that observation might explain it. We can't do a fundraiser, have an operation, or any other normal recovery fix and have any chance of it working. It is our sheer inability to get out of the frying pan is the problem. Ain't no way to remove the pan from underneath us.

So the reason I started this blog, and can't cover my main topic (which was how to deal with the chronic pain) is because there's really no way to deal with it. When you keep realizing that all your fixes are only temporary, it's incredibly debilitating. The human mind just realizes the fatality of the matter and stops trying, in order to conserve energy.

It's not like religion helps either. You cannot pray for people with chronic pain, and have them recover. Nor does religion make you specially equipped to handle the permanence of the condition. For illustration, just think of Paul, who kept asking God to remove his physical condition. God didn't, and Paul just kept asking. And life went on. I bet he eventually stopped asking.

In my experience, there is no way to deal with the long-term impact of chronic pain. You just have to go through it. You can't really resolve it. You can't hope to get better, because the nature of it is that your body cannot. Which is why I wrote in my last post, that you distract yourself. It's that or die. And you can't die, because your illness is not fatal. How ironic.

So now that I've said a whole lot of nothing, I have arrived at my lack of conclusion. There isn't one. It is one of the great mysteries of life, still to be discovered perhaps by an Isaac Newton or Albert Einstein.

Chronic pain means you'll have it for ever. And that's about the short of it. So - now that we've gotten that sobering topic out of the way...let's talk about the Party in the Frying Pan.

You coming? I hear there are good frog legs!!!

Thursday, April 11, 2013

How to Live With Pain: You Don't Dwell On It...You Keep Movin'

The reason I started this blog was to detail how to live with chronic pain in a joyful manner. I have not achieved that. Well, people think so, but I know the truth.

I have been trying to figure out what the answer is to handling the long-term psychological impact of chronic pain. I realized just this week the strategy I use most is distraction. I was about to blog on it and then...

I heard this quote by a Chopped contestant, formerly homeless Sammy Davis. Jr. He said, "Since I was a kid I just learned to live with pain. You don't stop to dwell on it. You keep movin...And that's just how it's got to be in my life."

This is really surprising to me, in a way. I never imagined that you could deal with emotional and physical pain in the same manner, but this makes so much sense. It's essentially what I've done. Sometimes to my detriment, in fact often.

But I just kept movin' too. I didn't stop playing the violin (for many years), I didn't stop traveling. I didn't stop  skiing (for many years), dancing, or exercising. I didn't stop going out. I didn't stop to sit down much in my house. Literally, I found the way to manage pain was to keep movin'.

So much so that my boyfriends have been annoyed. I just don't sit still. My cat is even annoyed! He now jumps up off my lap if I so much as cough, because he knows I don't sit still for more than a few minutes. The pain gets too annoying.

So I keep movin', and keep myself distracted.

That is the answer to living with pain. I have finally found it. Not ideal, but an answer. Not a solution, but still, it is.

An answer. Finally.

Thursday, April 4, 2013

Is what you eat getting on your nerves?

I have researched further (because that's what I do ;) the link between digestion and FMS nerve pain. And the latest research is amazing. It shows the link between FMS and SIBO, as I mentioned in the previous post. In case you are interested in reading it, here are the links:

Fibromyalgia, Irritable Bowel Syndrome And Endotoxemia

In lay person's terms, it seems to say that for people with FMS our digestive lining is compromised, so toxins leak out during digestion that shouldn't. A chemical is released and activated that connects with our central nervous system, creating systemic pain. The Arizona Advanced Medicine website describes it like this: "We may ingest a food which causes inflammation in the intestinal tract, sending signals to the brain, which are then expressed as diffuse pain in the muscles."

Anyhow, because I was so amazed by this guy's findings, I have already started the raw organic garlic treatment. He talks about it here:

I have been using it about 2x/day, because I have appointments to keep. But if I don't notice all the results I would like, I will cancel everything and try it for a week.

This guy's research is amazing because he sounds the most plausible of anyone. Ever. And he explains why more women than men get FMS.
In another topic, I have also been reviewing gluten and its disastrous effects on the body. I just got off the phone with a friend whose pain from arthritis has been significantly lowered through a gluten-free food plan. So I guess I might be trying that also...The Arizona Advanced Medicine Center also claims: "One of our patients had been diagnosed with fibromyalgia since 1996. In 2007 he came to us. One week after we took him off gluten, his pain was completely gone. Gluten, the protein in wheat, is notorious for creating chronic inflammation in many people."

Because I am still researching this, I will not say more on the topic about my experience except that I am feeling better with the use of the treatments I mentioned in the previous post. That means that I have established a clear connection between my digestion and FMS. We will see what is needed next...

Wednesday, March 27, 2013

Chicken or Egg? FMS or Digestive Trouble?

I went to visit my doctor this year for my annual physical. While there I asked what was up with my digestion. I said, right here is this spot that is always causing trouble. It is somewhere in my abdomen and it throbs like a heart-beat. What is it? He said your small bowel is located there. There are a lot of nerves there.

Really? So of course I went and googled. And googled. What I found added yet another puzzle piece to the mystery of FMS.

Apparently, I had it all wrong. FMS is not the cause, it is just a SYMPTOM. Wow. Who knew. Where have I been the last 10 years with all this research?

My latest research is on SIBO (small intestinal bowel overgrowth) and IBS. Not surprisingly, the mycoplasma virus probably caused both of these. It probably causes breast cancer as well. And this all fits in with my developing theory that all these problems are vaccine-induced when the government started mandating vaccinations after WWII. This fits the 1950s timeline where IBS and digestive trouble - and breast cancer - seemed to have emerged. Vaccines also fits into why FMS is a Gulf-War sickness.

Then, there is what they call leaky gut (yucky) where bacteria eats through your intestines and leaks toxins to your body. Hmmm. Something else to fix. And everyone is yapping about candida and what a problem it is. Not to mention parasites. Gees. Where does it end?!

Anyhow. On to the cure. (Ha ha. Should I have said treatment? Placebo? Next thing to try?)

You can google the benefits and why's of these if you wish. But last week I started using 

- Peppermint oil
- Olive leaf oil
- Coconut oil
- Wormwood
- Organic honey
- Diabe Tea (bitter melon, gymnema, Stevia)

Next up, among many other things:

- Black Current Oil
- Evening Primrose Oil

This is in addition to some other things which I won't confuse the article with, but they are a start. I have noticed benefits already, one of being which, that I. Can. Breathe. Yes, I have been able to get a full range of air and am not gasping like a fish out of water, which I understand is also a CFS symptom.

I ran across a blog today that I want to give a shout-out to. It is lyndsayjohnsonblog.com. I thought I had it bad that I have shooting pain in my muscles 24/7. The folks with severe IBS or SIBO have it far worse, and I feel so bad for them. Some of them report being doubled over in pain on the bathroom floor for hours at a time. I have never had this type of pain. But I learned from it - digestion causes pain. Who knew.

Anyway, I digress. This lovely woman, Lyndsay, reports that her diet is incredibly restrictive, and causes her a lot of emotional pain. I can certainly empathize with the very idea of restrictive diet. I think I should probably try such a thing, but I am going to try the modified version first I believe, and then I might try the very expensive Elemental food plan for 2 weeks to kill off the (possible) SIBO and see what happens.

More to come on this. I am off to write to Lyndsay, to offer my small tiny element of understanding.

Thursday, November 8, 2012

Want to Lower Pain? Revolutionize Your Sleep in 5 Steps

Feel like this? Often? Every night?

Let me help.

When you go to buy a bed (and you should have a good one if you have chronic pain), you will be hearing the "latest" in FMS theory. Apparently, according to the Jordans Furniture Sleep Lab tech, pain clinics for major hospitals in the area are still advising buying a bed for pressure points. Really?

FMS theory is stuck in the dark ages. Probably because no doctors with FMS are writing anything. Oh wait, ARE there any doctors with FMS? Doubtful.

So that leaves you with moi, yours truly, to give you some sound ideas when it comes to choosing a bed & sleeping well in it:

  1. Take a medicinal approach to sleep. What do I mean by this? Just this: Sleep is a medicine, not a luxury. According to some, FMS patients have an underlying sleep disorder. So get what you need in a bed, not what you want. This means avoiding the cushy, comfortable ones that you sink into and that relieve whatever pressure point pain you may have (this is merely the symptoms). And focus on the solution instead: increasing oxygen flow to your blood cells. So a medicinal bed means one that keeps your back perfectly flat, allowing your diaphragm to expand UPWARD when you breath, not downward into the bed. Your hips should sink into the bed slightly, but not your back. If your shoulders roll forward, they will collapse your chest posture and you will not breathe effectively all night long. Avoid any plush tops, use a flat surface only. This is the bed I ended up buying, that worked for me. It is a hand-tufted mattress from Jordan's Mattress Factory that has a foam exterior and inner springs.
  2. Sleep on your back most of the night. Put a rolled up hand-towel under your neck, and another one under your back. This was taught to my be my first chiropractor years ago, and I have slept like this ever since. Have a pillow handy for when you roll onto your side. But spend as much time as possible on your back. This will ensure the most efficient breathing and minimize the time your muscles spend in awkward positions.
  3. Sleep on the floor if needed. If you are in a place with a bad bed, move to the floor. I routinely sleep on the floor, even if in the most exotic locations. When you get a hotel room, ask for an extra blanket and sheet, and start the night prepared to switch to the floor. Even a few minutes with your back straight on the floor will realign your body and breathing.
  4. Focus on breathing, not comfort. If you subscribe to the reality that you have pain because your blood cells are misshapen, and have trouble getting through the little capillaries to carry oxygen to your body, you will focus first on breathing. You will be more comfortable if you breathe effectively, and focus on that as the priority, than if you sink into soft pillows or a bed that interferes with your breathing patterns. And if you are like me, and it actually feels better NOT to breathe sometimes, then you must prioritize oxygen flow. You may not want to do it naturally. (Don't ask me what this is, but sometimes it hurts to expand my lungs, and I hold my breath involuntarily. Not good.)
  5. Get out of bed in 7 hours or less. I have found that 6.5 hours is ideal sleep for me. Sometimes I need more, and sometimes less. But lounging in bed makes me feel WORSE, not better. If you are in pain, get out of bed. Do not expect your bed to provide something more for you in the next few hours than it did in the last few. Beds have limited function. Get in a hot/cold shower, go for a walk. Get your blood flowing, and do not expect bed rest to help you.
It is hard to exchange luxury and comfort for efficacy. It takes a lot of will-power, especially in this "you deserve a marshmallow puff cloud for a bed, because you earned it" era. But when you start realizing how much better you feel when managing your oxygen flow, than you felt when managing your pain, you will be motivated to choose. 

Need a simple way to remember how to lower your pain when sleeping?

When in doubt, chose oxygen over comfort. 

Your body will thank you.

5 Ideas for Dealing with a Control-Freak CPer

People with pain tend to be control freaks. We can't help it. Every little thing gets on our nerves  and this is literal if we have degenerated or damaged nervous systems, like people with FMS do. We are a nervous wreck of the Hespurus, and it sucks.

Two very little secrets I will share with you...we know we are control freaks, and we hate it also, along with the pain we hate. Second, we actually do applaud you for putting up with us. Really.

But that doesn't make life any easier for you. You - the tolerant, endlessly patient caretaker who feels like you have no rights anymore, because the Control Freak has eliminated them all for his/her "illness."

Here is the dilemma for us CPers (chronic painers). For us, it's not just other people that create drama in our lives. We have the problem of being at war with ourselves.

Imagine your worst enemy is your body. It turns against you, and you are left in an eternal battle to accommodate it, override it, fix it, hate it, love it, etc. Instead of other people being the focus, YOU are your own everlasting opponent.

Credits:  DeviantArt 
Yeah, it sucks.

So CPers do everything they can to minimize external problems, because that may help lower internal  ones. That may translate to...complete control freakiness. 

In case you think it is only annoying for you, who can't seem to even breathe without your CPer complaining about it, trust me. It is more annoying for your CPer. We are trapped in a cycle we can never leave. 

So what can you do when your beloved (or annoying) CPer once again controls the heating, the lights, the sound, every move you make, and every bark the dog makes?  Here are 5 ideas
  1. Forgive & understand. Realize this is not about you. It is about them being overwhelmed & in pain. They cannot change the factors that create pain for them, and they are just trying to survive with dignity.
  2. Offer to help. Yes, I agree. This is not the time you feel like helping. But, to quote a famous Nike slogan, Just do it. Say, "Cutiesugarpieloverbaby, seems like you are frustrated. Is there anything I can do to help you out?"
  3. Call it what it really is. Realize often the control freakiness is - frustration. Anger at oneself and the universe that dammit, we are sick. So address frustration in your beloved CPer, before you address the control issues.
  4. Leave. For the moment. If you are annoyed at the behavior, just take a break so you don't yell at someone in pain. That really never helps anyone. So go get ice cream. Go to the gym. Leave your CPer to relax alone for a few minutes without you creating more stress for them.
  5. When you return, ask to chat about solutions. Stand up for yourself kindly and graciously. If you want to leave your sox on the floor, or want to feel like you can, start speaking up. Let your CPer know that you need to feel the freedom to put your clothes on the floor, at least sometimes. Then ask what options might be available to lower frustration levels around it. Can you put your sox on the bathroom floor on M, W & Fri between 7 and 9 p.m.? Should you pay for a cleaning woman to come pick up your sox daily (do they even do this!)? Can you buy trendy, fashionable new sox from the Arthur George line and leave them on the floor beautifully? Can you have a certain area where you can stack sox 6 feet high, vertically?
It's not easy dealing with a control freak, but remember, they didn't choose this. Their internal environment is in chaos & pain. Your CPer (or you) didn't choose to be like this. They can't help it. But you can help negotiate how you live in their world, so that you also don't get filled with resentment or start needless arguments.

Support your CPer in controlling their world by making it liveable and workable for you also. It takes communication & thoughtfulness, but you will be providing true love & care by lessening their load.