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ME/CFS and the Need for a Little Extra Help

Posted Mar 03 2011 1:00am

I thought I should pop in and let you all know how I’m doing. As you may or may not be aware I have suffered a severe relapse. I have not been this bad since I first got sick 2 decades ago.

My days primarily consist of resting in bed (as I have no couch) 24/7 with short 15-20 minutes breaks where I am able to get up. Any more than 15-20 minutes, however, and my legs go rubbery, my lymph nodes swell and hurt, my throat gets raw, raspy or non-existent, and my little, tiny bit of energy starts to ebb away.

Monday, I had started seeing a very slight improvement. Mainly no raspy or missing voice and my lymph nodes had finally calmed down. I found out I was going to be able to move back into my apartment so I packed up my belongings only to find out 2 hours later that there was an unforeseen delay.

So I had to unpack half of my belongings (the apartment I’m in is unfurnished) to stay a little while longer. That was all it took and I crashed again. Hard.

Back to a raspy or non-existent voice, swollen and painful lymph nodes. My lymph nodes are actually so painful I can feel pain down my neck, shoulders and partway down my arms. Of course, my energy levels are again tipping down around 10% which means more time in bed. :-(

This severe crash has led me to cancel my lung doctor appointment and my eye appointment as I am too sick to even think of attempting those right now. I have also had to put the brain scan on hold as well.

As for my eyes, I have okay days and then I have days where I need to shield and withdraw to a darken place. I am no longer watching videos except if it is super special (like Rik Carlson’s, Invisible Movie) and am now reading all my books on audio.

When I type I close my eyes and I read using a reader. I have also purchased a speech to text microphone, however, with my vocal problems I am unable to use it at the moment.  I did test it out several weeks ago when I got it and it rocks!

I’m using everything available to me to reduce eye and vocal strain, thus, body strain. But I still find I need to withdraw, rest, and shield. A lot…

On the good side, the forced down time has left me much time to engage in my favorite hobby, reading. This past month I have polished off 64 audiobooks! I really have been resting!  :-)

It has also given my time to think and pray about where to go from here, if here becomes long term or permanent. That may seem odd to some, but one of my closest friends commented to me recently she has never seen me crash this bad or this long. And she is absolutely right!

Today, I made a decision to that end and hired a personal assistant. I have actually been contemplating it for a while but needed some breathing room in my budget first and was waiting to see how to do this.

It turns out that I have a friend who has decided to strike out on her own and helping me out worked out for her. So she will be coming in on Fridays for 2 hours and doing some light cleaning for me; simple things that just take too much energy such as cleaning the bathroom, mopping the floor, cleaning my huge, beautiful windows and whatnot.

In addition, she is going to handle my mail, my deliveries, and take my weekly veggie bag from the farm and clean and prep my vegetables so I can just throw them in the steamer or a pot or…just eat them raw.

We’re hoping this will grow and she can do even more in the future like design the cover of my book, run errands for me, run me to appointments, etc.

Just the knowledge that I will have someone here, who can not only help me, but run interference for me, if you will, feels like a huge load is being lifted from my shoulders.

I have come to realize that for however long, I have to find any way possible to do less. In fact, I’m am moving to a place where I agree whole-heartedly with Toni Bernhard, author of , How to Be Sick , that I need to figure out what I need to do and do 30% less. Of course, being below 30% makes that a little challenging.

Thus, in order to do that, I need someone who can pick up the mundane tasks of life so I can step back and decrease, thereby, increasing my ability to focus on what I believe I am called to do: write and help those with ME/CFS.

Determined to continue forward,

"Author's Signature"

© 2011, 4Walls and AView . All rights reserved.

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