Cycles of Fibromyalgia
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This is something that everybody with a chronic illness deals with. What we all tend to do on the "good" days, is try and get done everything that we had to let slide on the bad days. However, there is a problem with that. What tends to happen is that we push ourselves to do more than we really should and then crash and burn ... and are down for yet another round of worse pain and the need for extended rest. Which of course means, that things have to slide again. It's like living on a roller coaster.
Ok, so, how to try and avoid this ?
A few thoughts: These are both my own
personal thoughts, and my interpretations of comments by the experts in
Take the time to rest:
Sounds simple right ? However, we tend not to do it. We often feel like we are avoiding our responsibilities. Or worse, are told by others that we are avoiding them. And let's face it, sometimes we cannot avoid pushing it. But, we have to figure out a way to avoid the massive crash that happens if we over do it, so...
Don't wait till the crash before you do something:
By that I mean, we all know the signs, we can see the crash coming. We literally feel it in our bones and muscles. You know it's trying to happen, the trick is, learning to see that and try and deal with it while it's still small and easier to overcome. Rather than do what is more common, which is just keep pushing.
Now, is this always possible ? No, I mean if you are lucky enough to be able to drop whatever your doing and go lay down, or take a hot bath, rest etc., great ... but it's not entirely realistic.
I recall once, a doctor telling me to do this for migraine ( on site link ) He told me to "stop whatever your doing, go to your bedroom, draw the curtains and lie down." I just looked at him, like he had lost his marbles. I asked him "ok, what am I supposed to do, duct tape the kids to the wall while I go off and rest ?" Or say to my employer " hey boss, sorry, I have to leave now and go lay down, doctors orders" yeah right, sounds great .. but it's not always practical, which is where other ideas come into play. ( See The Bio mechanics, of day to day moves on site link, for many pages of detailed information, of just how to make it easier )
Postpone or get rid of unneeded tasks:
The world is not going to come to an end if you put off doing certain jobs. The dishes will wait ... the housework police are not gonna come and haul you off if you put off the vacuuming for a few hours, until you feel better. Simplify things, you don't have the energy reserves you once had. Your fund of energy can be 1/2 or less of what you used to have and you need to act accordingly. So work smarter, not harder.
There is almost no task that cannot be broken down into its basic parts and that cannot be done easier and simpler, than we normally might have done. It just takes thinking about it for a while, to figure out the easiest ways.
In the Army, they used to say "give the job to the laziest man in the squad" the reason being, he will figure out the easiest way to do it and then they would tell the rest of the company to do it the same way. :) Which is NOT to imply your lazy, but you have to think like the lazy man and figure out a way to get the job done, in the easiest way possible. Break it down into parts if needed, and do it over an extended period of time. And if a task honestly doesn't "need" to be done, don't do it.
That it means just what it says, hand the task off to someone else to handle and go do what you have to do, in order to stave off the flare. It's much better to take a day and avoid the flare, than keep pushing and crash for a week. This requires some help of course, which means there has to be someone about in order to delegate the task to, in the first place.
This comes hard to a lot of us, this asking for help. We are generally type A people, who were able to take care of things for ourselves. But it comes down to a simple equation, it's either ask for help for the day or force others to help for a week, when you go down. Which makes more sense? This takes planning and cooperation, so work it out with those who can help, in advance.
Don't take off like the energizer bunny:
By that I mean, if you have been in a resting phase since you crashed on your nose from pushing yourself, do not just leap up and attack the nearest thing that needs to get done, going full bore. News, you have been on your back for a few days, ease you way back into action. Don't just jump up and start doing things, or you will just wind up right back in the bed again, in very short order. As the body will go ... Hey ! You haven't asked me to do a thing besides rest for days, and now you want me to do what? Your body is going to protest such actions ... loudly. So, don't do this to yourself. Make haste, slowly.
Get organized, figure out what's the priorities for the day and how much of a fund of energy you have to fill them. Nothing is a bigger energy waster than a poorly thought out activity, I don't care what it is. So think about what you need to do and get your act together.
Example: Laundry, now it's not just walk up and dump things in the machine is it ? No, it's sort the laundry into types and colors, dirt levels, bleed factors. So, a simple way to lose this chore right off ? Segregated laundry hampers where the things get sorted out as they get dropped in. Which means one less action you have to take when it comes time to wash them, as they are already sorted out for you, ahead of time.
Now, training everybody else to DO it that way might take a little longer. Suggestion ... the first time they put a red shirt in their white bin ... wash it that way, exactly as they sorted it out and give them pink everything. Believe me, next time they will pay more attention.
By this I mean, can you put in a ramp, rather than stairs? Would a long bar down the hallway help? Rearrange the kitchen to where there is less reaching or bending, by bringing all the most commonly used items to the counter top vs buried deep in a cupboard. Arrange the cans and boxes on the pantry shelf to where the most often used items, are in there first. Likewise the plates, silverware, utensils, etc. Put them where you can easily reach them.
Rails on your bed side can be a big help, and failing that ... hook a sturdy rope to the frame, and use the rope to pull yourself up to a sitting position. Place a foot stool under your desk, to give you a place to put your feet up. Take a look around your house or work space, and remodel them to where they are the most efficient layout possible. Anything you can do that avoids unneeded body stress or strain, can be a plus.
Get ready for the crash:
No matter how much you try and avoid them they are going to happen, often due to things over which you have no control. Weather, secondary illnesses, extra and unavoidable demands etc. So, knowing that, get ready for them. Having a few good days ? Fine, cook up some extra food and freeze it in meal size packages. So when you are wiped out you can just haul that puppy out of the freezer, nuke it and wa la, home cooked meal. Think about it, there are lots of things you can do in advance to make the fall less of a chore to work around, as they are bound to happen.
Know the things that make you crash:
Simply put most of us can identify some of the things that make us to crash. Example: I know full well that to do ALL the laundry in one day, is a recipe for a crash. It's going to happen. Therefore, I try to space out the laundry over several days, or at least, postpone it for as long as possible. If I have to work on the car, I am going down, it's a given. So I plan for that and space it out if at all possible, or just do it, and accept that the price for doing it, is going to be down time. Anything you can identify the cause and effect, means one more thing you can modify or even prevent the cost for doing it, being a crash.
Weather and other Sensory Overloads:
There are a couple of things that are almost a given, for those of us with FM, things that are libel to bring on a crash, the weather itself for one and sense overload. High humidity for example, sudden drops in barometric pressure, shifts in temperature, high heat, extreme cold, all of these can cause you to start to crash. Knowing this, you can prepare for it and minimize it as much as possible by backing off your activities during such times. Learn to watch the weather, and your reactions to it and you will get to where you can predict the times you need to take it a bit easier.
Most people with FM are sensitive to noise, excess light and crowds. By and large, we can only handle a few of them at once. This means, having the kids hollering, the TV blaring, the dog barking at the door and trying to cook dinner all at the same time, will have you reeling around the room. So, we need to limit this. The kids, make with a little parental discipline here. The TV, same thing, down with the noise, train the dog etc. You see where I am going here? Control your environment and the sensory data you have coming at you.
If your going out, same thing, don't go to a restaurant during their rush hour ... go when the place is more empty, less crowded, you will enjoy yourself a lot more. Don't put yourself on the freeway when it's in grid lock, if need be, wait at work or wherever you are for an hour, then go, when the pace is not going to be so hectic. Limit how many people you have to deal with at once, whenever you can. It doesn't help a lot if you go out with a dozen people to the zoo, if you are so overloaded that you can't relate to any of them. Not to mention you are so over amped, that you don't have any fun.
This ones a biggie and hard for most of us, as it feels like if we accept a lower level of activity. Or delegate things, or try and pace ourselves, that we are "letting the FM win." News, it's not a contest, or at least not one you can win if you want to look at it that way. FM holds most of the cards here, you play the game by its rules or you suffer for it and all the will in the world is not going to change that fact.
You are not going to be able to live your life in the same way as you did. The sooner you accept that, the sooner you will get off the roller coaster of push and crash, as you will stop doing things that lead to that crash so often.
Learning to live with FM is just that, a learning experience and it's not the same for us all. Heck, it's not even the same from day to day, given how often it can shift and change on us. But we can, to a point, control some of that and make it less of a ride down the rapids here. But we have to understand, we do NOT have the same abilities as before and have to act accordingly.
Leave some flex room:
FM is not entirely predictable. There are things outside your control that are going to affect it and the best laid plans of mice and men and all that, might just have to go by the wayside on account of it. Plan for the unexpected and have secondary plans.
If you intend to go on a picnic for example and it rains, do you throw out the food ? No, you drag out some movies and do a Star Wars fest, or some such and everybody plies up in front of the TV and proceeds to munch down on fried chicken and potato salad. In short it means, ok, it rained and you didn't get to do what you intended at the park, but it doesn't mean you can't have a good time anyway.
For those of us with FM, this kind of alternative plan is likely to happen a lot more often, than for most people. Expect it, and not only plan for it yourself, but with the others you planned on going out with. They more than you, need to understand that some plans are gonna get dropped at the last moment and to just go with the flow and enjoy themselves anyway.
Ditch the stress:
We with FM are much more prone to stress reactions than others. But keep in mind, that ( FM is not a stress disorder, on site link )
However, emotional stress can make any chronic illness, flare ... Be it good stress, a family wedding for example, or bad stress, family conflicts. Both can leave us crashed on the floor. Now the good stress, the special events, plan for it, rest up and get ready for it and take it as easy on yourself as possible. As well as expect that yeah, you might go down on account of it, but hey ... how often is there going to be a wedding ? :)
Now, day by day emotional stress, that's another matter entirely and it comes from a lot of sources. A lot of it, from within. There is a lot going on inside our own heads, much less our bodies. We can be very frustrated people and we have to make a lot of mental adjustments, but it's like trying to put on tight clothes over a wet body. It's not a smooth slide, it's a series of yanks and jerks and wiggles, until we get it all to hang right.
Worry, frustration, grief and depression are going to be things you are going to have to deal with, over and over. So stressing out over feeling them in the first place, is just making matters worse. Your emotions are going to be higher and more tightly wound than they were. Expect this and act accordingly. The stages of grief on site link
The only thing in life you honestly and truly have any control over, is how you react to things. Be it outside events, or things inside your own head, you are in charge here. Emotional stress is NOT inevitable, it's not even a requirement. You can live your life perfectly well, without it.
It doesn't help anyway, so what's the point of doing it ? If I thought for one moment that getting all stressed out over something would help in the least, believe me I would be tossing the biggest fit you ever saw. I know, I used to do it ... often. I found out it didn't help.
I was just wasting energy, dumping tons of stress chemicals into the body that set off the chain reaction that leads to .. crash and burn. So when you find yourself stressing out, back up and back off, you are not helping yourself here. If need be, make a pact with your mate or kids to remind you of that fact ... if you start having a hissy cow over anything.
Understand that your body can't tell the difference between mental, emotional and physical stress. To the body, it's all stress and it does not matter if it came from the nice wedding you just went to, the fight you had with your spouse, or the frustrations your feeling over things you didn't get done today. It's all one, it's all stress. What you do, what you experience and what you think, all can be stressors. So it's not just physical actions that you need to pay heed to here.
Use stress reduction tactics, meditate, take breaks, do some fun things and take off the push. In short, stop and smell the roses once in a while, you will live longer and have fewer crashes.
Marriage and other relationship changes:
A simple factoid here ... sad to say it, but when major illness walks in the door, all too often whatever relationship we had, walks out. And it can take a long painful time doing it. The divorce rate when sudden illness or disabling injury happens, is around 75%. This is due to the simple fact that the spouse often cannot adjust to the changes.
They married a healthy person, they had certain expectations and those expectations just took a major dive. Some mean well, but they simply cannot handle watching you suffer and not be able to do anything tangible about it. The same fears, angers, frustrations that you are feeling ... well, so are they.
So realize, it's not just you that has to adjust here, so does your spouse, your kids, your family, your boss and your friends. More on this in another page, in more detail. But understand, it's an adjustment for everyone in your life. Letter to relatives on site link
Talk to them about it, help them to understand, but know this ... no one, from your doctor, on down to your kids, is ever going to entirely understand how you feel. Anymore than you can get inside them and know how they honestly feel. Realize a very simple and often painful fact, some of them are not going to be able to make the adjustment.
You may just have to walk away from your current spouse, parts of your family, your job and some of your friends. This happens to EVERYBODY, it's not just you and it's not your fault. You cannot change the minds of others, either they can adjust or they can't. If they cannot and they are just adding more stress to your life by trying to force you into being someone you can no longer be and creating more pain ... it's time to consider limiting the contact with them.
Learn when to say No:
First things first "get rid of any activities that do not benefit you and those that do not require your direct participation." Let me say that again, if a thing does not honestly and truly need you to be a part of it, and doesn't give you any direct benefits ? Then say no, your not going, especially if the outing means having to put up with irritating people, or situations. Family/Friends who care about you, will understand. As above, if they are trying to push and or guilt trip you into meeting your " social" obligations, ignoring the cost in pain to you, then perhaps you need to limit contact with them.I mean, why make it so hard on yourself ? If it is just going to mean pain ... forget it. Our energy is too finite to waste.
Word of warning:
Do not let others assume either that since your disability has taken you off the work force for instance and "you don't have a job" that this means you are their patsy for whatever volunteer project they have going this week. Or that you would make a good, drop in baby-sitter, since you "don't have anything better to do." Say no to such people, loudly and firmly, before they even get any ideas that this is acceptable.
You are not the local taxi who can pick up the kids from little league or any other "soccer mom" things, unless you enjoy doing them. Time for the S word people, that's right, the one we have spent years of our life avoiding. Know when it's time to be "considered" selfish and not feel the least bit of guilt about it.
Your energy is limited and overdoing it will just bring on pain, so if we must push, let it be for good reason. Reasons that are beneficial to us, not just because someone sees us as a pair of empty hands they want to borrow, most often for free I might add. If this has not happened to you yet, count yourself blessed, as some people just can't seem to understand that just because you have the time, does not mean you have the energy to spare.
Keep a journal:
I know, paperwork, but this has a purpose. If you keep a log of your health, when things happen, when this showed up, that symptom occurred etc. you will find that you can backtrack what things happened, just prior to those events. Did the weather change just before a crash ? Did you have wheat bread, just before that last IBS attack and therefore might have a gluten intolerance or allergy ?
The last time you didn't sleep all night, did you have a fight with your spouse the day before ? You can gather a lot of such cues that will help you, help yourself. As they might help you to identify things that you can avoid or limit, that are aiding and abetting the crashes.
It's also quite useful to make a short copy to give to your doctor once in a while. As it might help them, to help you more, if they can see the day to day events. As recall, they are not a mouse in your pocket, to see all of it personally and you don't have time to tell them "everything" that goes on, in the short time you have with them for an office visit. So having it all written up can be very helpful.
Lack of crashes does not mean, your all better now:
If you manage to avoid the major crashes and gain some equilibrium, do not be fooled into thinking this means, everything's all better now and you can go out and do whatever you want. Believe me, the first time you try it, you will find out that FM has not left you as it takes you down for another wild ride on the roller coaster.
Do not let others get the bright idea either that just because you are having more ok or even "good" days, than you did before, that it means that you are well now. It would be nice if it would just up and go away, but let's not kid ourselves here. You have it managed and you are in balance, which is great, but lets not get overconfident and go jumping off the deep end.
Once you have some balance going, you do NOT want to do the crash and burn thing again, by pushing yourself. The pacing yourself has to go on, the stress management, continues, etc. Nothing has really changed, except you are in better control over it and are not reeling from crash to crash, like a test dummy at Toyota. See Letting the Dragon sleep, on site link for this concept, in more detail.