Friday, May 9, 2014

Where did my brain go??

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:

- toothpaste
- mouth guard
- ibuprofen
- Robax
- 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

Fear of living

We are driving three hours tomorrow to visit with family for the week-end. Not only that, but while we are in town, we will do even more driving and socializing so that we can see our kids and other family. I was having a couple of pretty good days when I got the bright idea for this roadtrip. Now, I can barely get out of bed, my pain is through the roof, and I even have new symptoms I'm trying to manage.

Fight or flight

Those of us living with chronic illnesses understand the damage of this most basic function. We have been blessed with the ability to gain super-human strength for those occasional times in life when we threatened. The problem with many chronic illnesses is that we get stuck in fight or flight mode. Being continually stressed, whether it's from daily life or chronic illness, is pure poison for our bodies! So what's the answer?

Stress - Reality or perception?

Does it matter?? It's all about perception because if you believe you can't manage a situation then you will feel stressed.

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.

Now what?

My biggest hurdle right now is that I know what happens when I push my body to do more than it can handle. I have a history of cause and effect, and to ignore that and push blindly on is foolish. So, now I have to learn how to mitigate the added stress on my body. Some of the things I will be doing:
  1. Wear dark sunglasses or even a sleep mask for the drive down.
  2. 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**
  3. Refrain from conversation - This one is particularly difficult for me as I love chatting with my hubby on roadtrips.
  4. 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.
  5. Spend as much time on a couch as possible - Thankfully our family understands my weird health needs and are more than happy to accommodate.
  6. Talk less, listen more (see #3).
  7. Take lots of rest breaks - This is where my walker becomes invaluable as I can stop and sit down anywhere I am.
  8. 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.
  9. 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.

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How does stress affect your health? How do you manage the stressful times in your life? What can you add to my roadtrip list?

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


Tuesday, May 6, 2014

Hello spring - now please pass the tissue

I have been very congested these past few days. I didn't think much of it as I have discovered that these symptoms rotate in a similar pattern to my pain. I started my Oil of Oregano drops and, when that didn't work, I escalated to a saline rinse for my sinuses. That certainly helped, but then this morning I awoke feeling like I had been hit by a truck. I had all the flu-like symptoms you could imagine:
  • dizziness
  • congestion
  • widespread body aches
  • severe chills (my temperature was 93 degrees and I had to put my winter jacket on)

It was like my regular ME-CFS/chronic pain symptoms x 10!

I am limited to what medications I can take for colds and flu because of my pain medications. I decided to take an anti-histamine in hopes that it would at least help with the congestion.   Within about 45 minutes, the chills diminished to where I no longer needed my jacket, my head cleared, and I actually felt reasonably human. This was obviously an allergic reaction.

Chronic illness and allergies

I decided to do some investigating to see if there was some correlation between allergies and chronic illness. It turns out that it is very common to see allergies in people with ME-CFS and Fibromyalgia - joyous. I must say, I am not entirely surprised given the role of the immune system in many chronic conditions. I also don't dare complain (too much). I'm thrilled that I could actually get relief from any over-the-counter medication! It makes me feel a bit more "normal" somehow.

Always ask your pharmacist first!


I am very aware of the amount of prescription pain medication I take every day. The last thing I want is to have a nasty drug interaction with something I buy off the shelf at the grocery store. Before I buy any type of medication, I run it by my pharmacist first. They have a record of everything I take and they usually know how these various drugs can interact. However, when in doubt, double-check with your doctor. When it comes to medications, I don't believe there is such a thing as being "too careful".



Remember - this is your body! 


You have every right to ask questions. Keep asking until you feel comfortable using whatever medication you have purchased.  As the old saying goes - better safe than sorry.

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Do you suffer from allergies? Did you have them before you became sick? Have they become worse since you developed ME-CFS/Fibromyalgia? How do you get relief?



Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. James 5:14



NOTE: This is blog is never meant to diagnose or recommend treatment options. Always check with your doctor before taking any medication or beginning any new treatment plan.