Just wanted to write a quick note to explain my absence lately. We spent the weekend driving back and forth to my hometown of Rochester, NY, for a family funeral. Traffic and a closed road Friday afternoon led to a 10-hour drive to get there, arriving at my dad's house at 11 pm, then a very long day Saturday with the funeral home, church service, cemetery service, and family meal, followed by an 8-hour trip home on Sunday.
As you can imagine, I was pretty wiped out Monday morning...but I still had to go out to get some groceries and a new phone (ours broke Friday). Today was a two-hour initial meeting with a disability lawyer, which was the last straw. I'm pooped - achy and sore throaty and out of energy.
I really intended to write about my newest treatment (using beta-blockers to help control OI), but I just can't put cohesive thoughts together to explain anything medical right now. Maybe tomorrow. Looks like take-out for dinner tonight.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
12 comments:
Sue,
Hope you can get some good rest and that you recover quickly from all this. Just reading about it makes me tired....
What is OI? When you have the energy to post...
I'm sorry for your loss.
Blessings,
Elaine
Thanks so much, Elaine!
Here's my post on OI:
http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html
Sorry for your family's loss, Sue. Take care.
Elaine, OI is orthostatic intolerance. You can search through this blog for it, and Sue's posts are very informative. Best of luck!
D.
Oh nevermind, saw your next comment Sue.
D.
Those long road trips can take it out of you. I hope you get rested soon and feel better!
Whew. Ten hours? Can you sit that long or do you have a way to stretch out. Very busy time. I've heard Beta Blockers have helped with OI, so that'll be interesting to read later.
Rest, rest. I'm doing the same and I've only been going to medical appointments...not long road trips.
I was diagnosed with 'fatigue' on Monday, 14th Feb by my endocrinologist. Couldn't understand why I felt so AWFUL! Have a history of hypothyroidism but everything came back normal so not taking meds. Felt like crying when the thyroid results initially came back...thought either I was crazy or my doctor was because it left me with.."Then what the h is wrong with me!". I am so happy to have found this blog. Feel like I have kindred spirits. As I read through all of your posts I keep saying...yeah that's me! Thank you:)
Jane -
I'm so glad to hear you have found some comfort and camaraderie here - welcome!!
Don't settle for a diagnosis of "fatigue" - that's meaningless and a cop-out by that doctor! Fatigue is a symptom, not a diagnosis, that can be caused by LOTS of different medical conditions.
If you think you might have CFS, take a look at these websites to help you decide:
The CDCs definition of CFS (it's not perfect but it covers the major bases):
http://www.cdc.gov/cfs/general/symptoms/index.html
The symptom referred to as post-exertional malaise is a critical component of CFS - that's when exertion makes all your symptoms much worse. So, if you took a walk or went to the grocery store, later that day or the next day, you would suddenly feel like you have the flu.
Here's a self-quiz for CFS:
http://www.cfids.org/about-cfids/do-i-have-cfids.asp
More info about diagnosing CFS:
http://www.cfids.org/about-cfids/diagnosis.asp
And a list of lab tests that can help to confirm or rule out CFS:
http://www.cfids.org/about-cfids/diagnostic-testing.asp
If your symptoms DON"T fit CFS, then use the list on the above page to help narrow down what might be causing your fatigue. Don't give up! Finding the underlying cause of your fatigue will help you to find treatments that can help you feel better. Hypothyroidism alone causes fatigue, but it should improve dramatically with treatment.
No matter how things turn out for you, you are welcome here! Please let me know how things are going for you -
All the best -
Sue
Pooped is such a great word. One feels like poop! Take time to rest my friend. Sounds like the broken phone was the last straw!
Jo -
That's funny...you're right! Dealing with the phone not working while trying to get packed and out the door to the trip was just the last straw!
Sue
Sue, I hope you bounce back quickly. It makes me smile when I see that, even when you're under the weather, you're there to reach out to new followers and share your wealth of information with them. We're all blessed to have you.
I'm so sorry for your loss. Take your time and do what's best for you; your blog will still be here when you're feeling up to it! Feel better!
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