I have tried over and over to start writing here, and just keep erasing what I write. I’ve always tried to avoid writing “why I haven’t written” blog posts, but I’m not sure what else I can say right now.
The last couple of months have been pretty hard. Evidently, I finally reached the place where the accumulated stress of the last few years has started to affect my body and I’ve had what I believe are a flair-up of the residual effects of having had Guillain-Barre Syndrome (GBS) eight years ago.
GBS is fairly rare auto-immune disorder where the body’s immune system attacks the peripheral nerves, resulting in varying degrees of weakness and/or paralysis. I had a fairly mild version (no complete paralysis or problems breathing) originally, and healed rapidly after treatment to stop the progression of the nerve damage. My neurologist told me then (and still believes) that basically once you reach whatever degree of healing you will after the initial event, you are healed, and there is only a extremely rare chance that you will be affected by GBS in any way again in the future. I loved that prognosis.
But as is the case with most auto-immune issues, I’m finding that I now don’t believe it’s all that simple. I “hit the wall” from stress a few months ago, and began to have lots of fatigue and eventually a return of some of the neuropathy (nerve tingling and some pain and weakness) symptoms that I experienced with GBS. My neurologist believes it doesn’t have anything to do with the GBS and looked for other explanations for the neuropathy I was experiencing, but couldn’t find any. Thankfully, the worst of these symptoms have gone away again, though not all of them.
So I’ve been resting a lot, still dealing with more fatigue than I’ve ever had before, and researching a lot of stuff online. Many in the community of people that I have reconnected with at the GBS Foundation forum believe that there is probably a post-GBS syndrome, very similar to post-polio syndrome. I have met many people online who, like me, thought that they were completely healed from GBS for many years, only to struggle with fatigue and neuropathy issues years later. In this possible post-GBS syndrome theory, it seems that the nerve healing that happened after the GBS doesn’t necessarily last your whole life, and can break down with age and/or stress.
What I haven’t felt able to do was write. In many ways, writing is what I want to do most right now, but I feel very blocked. It’s time for a radical re-ordering of priorities in how I spend my time and I’m not sure how to go about that. Thankfully, it’s summer and the school-year pressures of kids in school and working part-time as a sub are gone for now. We’re about to take off on a 2 ½ week road trip for a family reunion and to see my 104-year-old grandmother. I hope to write during this time, but I probably won’t be blogging much still.
So I'm officially acknowledging what's been obvious here for weeks - I'm taking some kind of break from blogging. Have a great summer, and I'll see you when I see you. And if you are experiencing stress in your life, I encourage you - as I am saying this same thing to myself - to look at how you are ordering your life and what you can do to counteract the stress. Too much stress is not good for our bodies.
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8 comments:
I hate auto-immune diseases, they are insidious and stealers. But thank you for your clarity and your honesty, you have spoken words I need to hear today. Peace to you during this recovery, and much fun and laughter with your family.
Thanks, anj.
I've thought of your struggles with RA often over the last few months, and you've been an inspiration to me to face the new limitations that I'm experiencing. I've really appreciated how you have blogged about some of those changes over the last couple of years.
Be well and God bless you.
O ::thrive luminousmiseries || onionboy.ca
I'm so sorry it's been difficult. I too echo Anj's words - I hate AI diseases. Hope your holiday is restful and all you need it to be.
Traveling mercies!
My hub was diagnosed many years ago with Epstine Barre. It resullted in three years straight having pneumonia each Feb/March. It went away, but I've often wondered about the residules...
You'll be in my prayers and I will keep returning to check on you!
Blessings and health to you!
Peace be with you, I mean that. I have you in my rss so if or when you write I'll see.
O ::thrive luminousmiseries || onionboy.ca
as i read these words i could hear familiar words . . . auto-immune diseases as you likely know "cluster" in families . . . the truth is i can barely remember my father every being "well" . . . he had an auto-immune disease too . . .
this issue of priorities is a critical one . . . i am praying for you . . .
Lord. have mercy.
Christ, have mercy.
Lord, have mercy.
:::peace!
I hope your summer is going well and that you're finding peace. I'm so sorry you've had to deal with all this stress and illness. I'm saying a prayer for you right now.
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