Monday, May 7, 2012

Breaking Point

I realized I hadn't written in a week or so, and I guess I need to back up and give the full story...

My life has been running smoothly- I have been enjoying my job, I love watching my children grow, and I have been motivated by working on all of these projects.  Life has been good!

There is something that is always lurking. It is my shadow, and I wish I could shake it. I have good days, and I think that maybe it was a dream- maybe I was exaggerating the pain.  Maybe I was just being a wimp.

Then it hits. And I feel like I have been run over by a Mack truck. Then the truck backed up and ran over me again, and again, and again. 

I went on for years like this. It was the aching like the flu, but for every day of my life. If you can imagine the aching that makes it hurt to change the channel, hurt to blow your nose, and wonder if you can even make it to the bathroom and back--this is what I deal with every day.  You learn to live with it, but it's misery.  There's no way I can go without a job, so I carry on. I try to remain optimistic that there will be treatments that will work, but so far there has been nothing.

The pain is bad, but the worst part for me is that my brain gets slow. It almost feels like it comes to a grinding halt.  I know when there are too many messages traveling around my body, it is hard for one to concentrate.  I also know that I am particularly sensitive to my brain and it's ability to think.  So, while people may not notice that I am having trouble, it is killing me inside.

This morning was my breaking point.  I have had a week of pain that has been building, but I have really tried to shake it.  Looks like remission is over, and a flare is in the works. I was already going to be home today to care for a sick child, so I am now able to regroup and look at what I need to do to maintain some sanity.

In the past, I remember that eating certain diets has helped dramatically.  It looks like I will be taking another look at the gluten-free diet.  I have read a lot of conflicting research on the matter, but I know that for me personally, it seems to work.  I also know that there is a lot of food allergy in my family, particularly with wheat (on both sides).  I guess this was a long time coming...

I also need to exercise my boundaries, and say no to extra things.  There has been a lot of undue stress lately, and I am sure it has taken its toll.  I know that I am worth nothing when I am miserably sick, so I need to put myself first.  Since I am the sole provider for myself and my children, I need to be extra-vigilant to make sure I am well enough to work.  I am sure that situation in itself creates extra stress.

I have a few more weeks of work, then I work a very light schedule for a month (extended school year).  This should provide me an opportunity to keep my mind active and bring in some money, but also get the rest I need.  I also have a ton of projects I'd like to get involved in. I have books to read, places to go, and a massive scrapbooking project to undertake.  These are all things I will enjoy, and that will be low-stress, so I am sure they will be healing for my body and soul.

I always take it hard when a flare starts up.  It's like I let myself down.  For those of you that don't know much about fibromyalgia/chronic fatigue syndrome, I am going to take an opportunity to educate.

Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) are regarded as two different disorders, but are often overlapping.  CFS focuses on immune dysregulation where you feel an incredible amount of disabling fatigue, often with a low-grade fever and achiness.  It's not fun. At. All.

Fibromyalgia is over-active nerves and tenderness throughout the body. It's a widespread body pain that will wipe you out.  It often feels like the pain you have from the flu, and it also causes hypersensitivity to the world around you. Touch, fabrics, temperatures, lights, smells- everything causes headaches, nausea, irritability.  It's like your body is on sensory overload, and is just SCREAMING!!!

For a long time, doctors thought people were just crazy. I really believe because there are more women diagnosed, it went along with the fact that some people believe women just have psychosomatic issues or are just faking for attention.  The reality is that there are men that live with these illnesses, but are under-diagnosed, or don't go to the doctor for care for fear of the label.  There is also a strong connection between people that have suffered abuse or some sort of trauma and fibromyalgia, so some people are quick to believe it is some sort of mental label.  The brain rewires pain signals after physical traumas (violent attacks, car accidents, abuse, rape), so it is no wonder that people would end up with chronic issues involving nerves, muscles, and the immune system after such events.  It should be mentioned that some people develop these problems with no such histories.

Sleep disorders- my last rant.  I think the body would be able to heal itself if decent sleep were to occur.  People with CFS and/or FMS desperately want and need sleep, but can't get restorative sleep to save their lives.  My body never goes into deep sleep.  Well, it can go into deep sleep from the hours of 1-4pm pretty reliably, but I can't seem to find a job or lifestyle that is conducive to that sleep pattern.  So, I live a life of sleep deprivation.  Sleep aids don't help, I monitor my exercise, and I still end up exhausted.  I fall asleep early, and "should" get plenty of sleep.  I wake up exhausted beyond belief. every. single. morning.

For those of you that already knew about CFS/FMS, I apologize for my PSA.  For those of you that didn't know, I hope that offered a brief summary.  I am not a pessimist by nature, and I guess that's why I have lasted so long.  I am quickly becoming a realist, and I am seeing what I am now capable of handling.  At this point, I am looking at the next few weeks and seeing I will need to follow a pretty tight schedule.

So the kids' birthday party is going to be relatively low-key, the work commitments will be met, and nothing more, and to those of you that send me messages and want an immediate response- I apologize in advance.  I am going to make an effort to see friends, to laugh every day, and to get hugs as often as possible.  I want to stay upbeat and positive in what I know is about to be a rough time.

No comments:

Post a Comment