IDSA Comments Book

IDSA Comments Book

CLICK HERE TO READ

  I want to say a big thank you to Creda Perilli, and anyone who helped her put this together! It took a lot of work.

Also thanks to the Burdges, Doug Flamboe, Tamara Guillen and Timothy Grey for hand delivering them to Congress!

And thank you to Todd Meese for supporting this financially and kicking off this whole event by posting the first comment!

   

Five Minutes at a Time

How to cope with Chronic Illness is definitely a "learning experience."  There are many different levels to it and every person goes through each level at their own pace.

Panicking- I remember the first signs of illness, my heart racing and beating funny, panic attacks, and just a weird overall feeling that I couldn't explain that things were not right. All tests at the dr office or ER would come back normal. And it was a pure sense of panic to figure out what was wrong with me. Anger at doctors, fear of every symptom I experienced. The fear of dying.

Searching For Answers- Then came the years of searching for answers. Going from doctor to doctor, chasing cures. Trying this and that and whatever treatment that anyone said would help them. With each new doctor or treatment it would bring me a sense of hope, maybe this will the one that can help me, maybe this will be the miracle treatment.

Feeling like I was going to die.

Losing Hope- One night I had a stroke. Or what the ER termed, either a TIA (transient ischemic attack) or a Lyme Neurological Event. They didn't know what it was. I woke up and couldn't move my right arm. I had partial Bell's Palsy, and I was confused. This was the day after Christmas three years ago. I have never felt right since. And for five months after this, I laid in bed. I couldn't get up. Each time I did I felt extreme pressure and pain in my chest and neck, so there I lay for as the world went on around me. Sometimes I couldn't even make it to the bathroom and would go in the garbage can on the side of my bed. I couldn't get up to take a shower, but doctors would not acknowledge me. They refused to order home health care. Ironically, that had been my job my whole life, yet, here I was in need and couldn't get it.

Gaining a different Perspective and a Renewal Of Hope-  For about five months all I could do was lay there, in bed.  I wished that I would die. I prayed as hard as I could for God to take me. I didn't get up to eat, I just laid there and if someone brought me something I'd eat. But inside I just wanted to be gone. I tried to will my soul out of my body. One night I had a dream my soul floated up out of my body to the ceiling, and I was so thankful to God, I was so happy I was out of this body. Then I woke up and I was back. I was so disappointed. Then....

Something hit me in that moment. I had one of those aha moments. I realized that doctors were not going to "fix me." And if I didn't want to live like this anymore, I had better get up and start trying to fix myself. God was not taking me, so there must be a reason I was still here, and I better buck up and figure it out. I started reading a Wayne Dyer book that was sitting on my shelf for years, then I read a Deepak Chopra book. Sometime's I feel these two books saved my life! Both books were about healing, but not necessarily the kind of healing you might be assuming. It was more of a spiritual, mental healing, not a physical healing.

I don't remember what I learned specifically from each book, but I remember the basic lessons I walked away with.

Enjoying the sun with my cat Squeakers.

Live in the Moment- Or as I put it, take five minutes at a time. I realized that half my anxiety came from, worrying about getting to the next doctor appointment or how I was going to go to the bathroom, or when I could take the next shower. I knew I needed to calm this inner voice that was constantly thinking of the next thing to worry about. I had to constantly remind myself to "stop." And to breath. So I'd think to myself, what is happening in the next five minutes? That is all I have to think about and get through. If the time comes for a doctor appointment and I can't make it, so be it, I will cancel in the moment. No need to worry about it now, twelve hours ahead a time.

Accept This Is Where I Am- The other thing I had to learn that helped relieve my constant anxiety was learning to accept where I was in the moment. I'm not talking about what I wrote above with the five minutes at a time thing, but more looking at the bigger picture. I know that at one point in life that I had hopes and dreams of travelling and getting promotions, buying a house, owning a new car.  In fact right before I got sick I had just gotten a promotion. But I realized, it didn't matter, I had to stop chasing those dreams, and start over new. Wipe the slate clean, what I did before was what I did before and I could be proud of all of it. But now, things are different. And I have to accept the limitations I have now and re adjust what I expect of myself now. Letting go of guilt for not being able to go the store to buy groceries, or make it to the kids PTA meetings was hard,  these things are hard to miss. But at some point you have to accept and do the things you can do. If you can't make it to that soccer game your kids are in, then when they get home, have them throw a DVD in the dvd player and have them crawl into bed with you to tell you about the game then you guys can relax and watch a movie together. Remember being sick is not a choice. How you handle it, is.

Little Things I Learned to do that Helped in Hard Moments-

• Read, reading can really take you away to a different place and get your mind off symptoms.
• Just watch my pets. Watching my silly dogs wrestling around playing, or my car purring by my side is so relaxing. Take in the moment of peacefulness. I think in this busy world when we are well, we lose touch of "simple things."
• Lay down in the grass outside. (Okay if ticks make you uncomfortable use a blanket) but get outside for a couple minutes a day and close your eyes. Feel the warmth of the sun on your skin, feel the wind blow on your face, hear the birds singing. I always feel closer to God when I am in nature.
• Meditation- this was huge for me. Especially because I can not take pain killers to deal with pain. I had to close my eyes, I couldn't really sit up yet, but I'd just lay in bed and picture what I wanted life to be. I know some say you should clear your mind completely, but I didn't do that. I used imagery. I pictured my arms and legs feeling normal and running through a field. I pictured being by the ocean and feeling the waves crashing at my feet, I could smell the ocean air and hear the waves. Before I knew it, I was NOT thinking only of my symptoms. I was away, I got a break that I needed doing this. It was like a little mini vacation in my mind.

Anyways, no matter what stage you are in, I hope you are finding things that you can do to help yourself. 

• If there were things that helped you like this, please feel free to post them below in the comments sections. 

How Can We Help Ourselves?

It is so easy to just try to put the issue of "Healing" into our drs hands. But with these mystereious illnesses, it's more compliocated then that, we can't just take a pill and get better. Sometimes I feel this is a lesson to us all on how to change the way we live. We must become more conscious of our own choices. We have to change how eat, the stress we put ourselves under, and how we live our lives.


Now all this being said, I'm not doing the "blame the victim" game. I am just saying there is some things we can do. Here's some things to think about.

• We did not ask for this stealth bacteria to enter our bodies, but now that it  has, what are we going to do about it? Are we going to continue to eat crappy nutrition less foods and make our bodily environment great hosts for this new intruder? Maybe by simply changing diet we can make it harder for bacteria, parasites, and viruses to take hold and thrive. So maybe before we take that next bite, we should ask, are we feeding and fueling our bodies, or the bacteria?

• We don't ask for the outside stressors, like a shitty boss, or our partners getting laid off. But, we do sometimes take on an overloaded burden with our choices. I know I am a big offender of this. So is it fair to take on more then you can handle and then complain about how stressful it is? Maybe we  should be more true to ourselves. And by being true to ourselves, we will be more available for when people really do need us. So next time you are asked to run the carpool, or be the organizer of the next church event, ask yourself if you are physically and mentally ready to do these things, without it coming as a price to your own health. Remember the tree must be strong to bear good fruit. 

• Exercise, now I'm not talking about running around the block. I'm just talking about when we lay in bed or sit in front of the computer all day. Get up and stretch on a commercial. Take out a half hour during the morning or evening and watch a yoga youtube video and stretch along with it. I know with Lyme and other illnesses that it is very hard to exercise. Today I had a hard time standing in the shower. But there are moments we can do little things, like stretch or walk up and down the hallway.

• Rest, this is a hard one. Many with chronic illnesses feel like they "rest" all day long. But I'm talking about the kind of rest where you are really actually resting, not the kind where you are experiencing the "mind racing" of what do I have to try to do today, or what didn't I do, or what do I wish I could be doing. No, laying or sitting down does not mean resting. You have to find a way to let your mind rest. Whether you use imagery or meditation or just let your mind go blank. Find a small time period each day to let the stress just float away even if for fifteen minutes.

So after reading this, I'd like to hear you opinions and goals. What CAN you do to help yourself feel better each day, and what are you GOING to do to help youself feel better. 

Arianne,s Blog~ A list of what helps with Chronic Fatigue Syndrome

Arianne is a friend I met online. We are both battling Lyme Disease, only she is now in remission. She has been doing really good for a year. She has a blog and just did a post about how she is staying well. She does a raw food diet and cycles through herbs and supplements. Please check her blog out. She made a list on there of what she takes and what helps her. When seeking out how to get better, we must follow the examples of the ones who are better.

http://baringfruit.wordpress.com/2012/02/07/what-gets-me-going-how-i-handle-and-have-mostly-beat-chronic-fatigue/#comment-9