Friday, October 17, 2014
Tuesday, September 9, 2014
Don't give up!
The right way to fight
OK, deep breaths...
I grow so weary of doctors who refuse to hear me, or who can't be bothered to connect the dots of this maddening illness. However, am I expecting or even demanding something that simply doesn't exist? There is no cure for ME-CFS. Most doctors have not read the research, which continues to grow. Bottom line is, the more upset I get at a system that doesn't know what to do with me anyway, the worse I will get - period.
Is that what I want? Is that what YOU want??
A wise man is strong and is better than a strong man, and a man of knowledge increases and strengthens his power Proverbs 24:5
Friday, May 9, 2014
This post is being done from my phone so please excuse any boring formatting issues. I just didn't feel like this could wait until Monday. What transpired today defies all logic!
As you may know, cognitive dysfunction is fairly common with ME-CFS and Fibromyalgia. To call it "brain fog" is like calling Mt. Rushmore a bump in the road! OK, perhaps I am exaggerating a bit, but you get my point.
I used to be VERY organized. I never needed lists and Smart phones with all their great reminders were nonexistent (almost like dinosaurs). What happened to me today was sitcom worthy. Here is the list of everything I forgot to pack:
- mouth guard
- Tiger Balm
- prescription sleeping pills
I did make sure to pack jewelry and makeup... (sigh)
The things that didn't make it into my bag weren't kind-of-nice-to-have things. They were things that I can't do without - period! So my poor hubby, after driving for almost three hours, had to go back out and hunt these items down.
Needless to say I have learned my lesson. I will NEVER pack without making a list first - AND I will USE IT!!!
Do you have any funny/ridiculous stories that you would be willing to share? While cognitive dysfunction is no laughing matter, those of us affected can at least keep our sense of humor about it.
Happy Mother's Day!
Thursday, May 8, 2014
Fight or flight
Stress - Reality or perception?
I used to thrive on stress at work. Why? Because I felt I was: a) capable of handling it, and b) I felt in control of it. However, as life went on, other stress factors pushed me into a constant state of negative stress. Add severe chronic illness to the mix and my body simply could no longer cope. I recognize that my ability to manage stress is vitally important to my health. I can also see how chronic illness made this almost impossible. Why? Chronic health conditions can themselves make it more difficult for us to manage stress! When you see the rates of depression with various illnesses, you see just how big a problem this is. It is important to also note that depression can be a symptom, not just an effect. For example, one of the symptoms of hypothyroidism is depression.
- Wear dark sunglasses or even a sleep mask for the drive down.
- Increase my pain medications slightly - This will help ensure that the vibration from the road don't trigger a flareup (it sounds weird, but it has happened). **do not exceed your prescription limitations**
- Refrain from conversation - This one is particularly difficult for me as I love chatting with my hubby on roadtrips.
- Lie down in a dark room for at least 30 minutes after we arrive - Again, particularly difficult for me as I want to visit with everyone.
- Spend as much time on a couch as possible - Thankfully our family understands my weird health needs and are more than happy to accommodate.
- Talk less, listen more (see #3).
- Take lots of rest breaks - This is where my walker becomes invaluable as I can stop and sit down anywhere I am.
- Breathe - Have you ever noticed your breathing? I know that when I'm in the middle of a flareup, my breathing gets very shallow. This only makes the stressful event even worse! Take slow deep breaths, focus on things that bring you peace and joy, believe that you will get through this moment in time.
- Pray and ask for prayer - I have many people praying for me. My hubby and another friend of mine are incredible prayer warriors. I turn to them during times of intense pain/fatigue; times when I just don't feel capable of praying for myself. It helps every time!
Where to go for help
Talk to your doctor, find a therapist, read books, meditate, look for joy in the smallest of things! Do things that make you feel better and stay away from things that don't! I know this sounds overly simplistic, or even impossible. We can't always stop doing things that stress us out - that is why we must learn how to manage the stress in our lives.
I know I will survive this trip. I just need to honor my body's needs instead of blatantly ignoring them. There's a lesson in there.
2 Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith develops perseverance. 4 Perseverance must finish its work so that you may be mature and complete, not lacking anything. James 1:2-4