Friday, May 07, 2010

It's been a while......
I could say that life got in the way, which would be partially true, a state of not living would be more accurate. Truth is my illness got in the way, and I try not to write about my illness in this blog but focus on 'normal' or a sense of normalcy. I have been really really ill. 'Bed ridden' ill. 'Being up for a few hours' ill. Screaming on the top of you lungs silently, in so much pain. So much pain I'd rather delivery 10 children naturally and scrape the wallpaper of the walls with my nails than having to live with this pain for another minute. 'Rocking back and forth in your bed' pain, 'with no more tears left to cry' pain.

Cognitive disfunction, forgetting words, writing words backwards, mixing up EN with NL(Dutch) total brain fog, worse than the fog on a fall day on London Heathrow, and lets not forget the vision problems. The days that I could not see my monitor, it was all one big blur. No matter which size glasses I tried from 2 up to 6 not one of them helped me se any better.

Than there was the sound, the high pitched tinnitus in my left ear, and the low frequency noise sensitivity that I suffer from and is mostly noticeable at night when the road workers start their compressors and the hummmmmmmm that goes on and on and drives me insane and up the walls. No earplugs will help here, in fact it made it even worse.

And than the vertigo started which makes you feel like you're on a ship on high sea. Vomiting, room spinning around you, pair that with Orthostatic Intolerance and you have a complete disability. With Orthostatic Intolerance there is a low blood volume and a sudden drop in blood pressure. The blood can't reach your brain in time and you pass out, faint, syncope. Goes well with the vertigo.

Last but not least the spinal cord. The spinal cord is possessed, occupied, a hostile take over by a great variety of intruders, bacterial infections, viruses, to name a view; Epstein Barr, HHV 1 and 2, HHV 6, CMV, viral and bacterial pneumonia, Lyme and the latest XMRV?
They like my spinal cord, I think the chew on it especially the lower part, right above the buttocks that is causing excruciating pain, spams and weakness. Whatever the do they are having a ball and I am not.

2 months ago the Pneumonia decided to go all out and caused havoc. I became very ill, with an actual fever! This for a person who's basal temp is 35C/95F. Insert here my physician who was on a month log vacation and we have a small disaster on our hands. I have to avoid going to ER at all cost. The most people die in hospitals so it's not a healthy place to be.
Try to explain all of the above to an ER nurse. You think she's going to believe you? Right... think again.
No ER's can do nothing for people with ME(Myalgic Encephalomyelitis), in fact they make it worse. i have never heard from one of my ME friends who said; hey you know what I went to ER last weekend and I came home energized and pain free! No, unfortunately not. Most people come home and decline ever further due to all stress in hospitals, the bright lights, the noise, the uncomfortable painful bed/table you have to lie on, the abuse you have to endure from resident dr.s etc.

So is had to handle this crisis on my own. The only other physician I had on my list as an appropriate replacement had a deadly accident that weekend and was off my list.
Luckily my physician trained me well and I knew vaguely what to do and I slowly came back to the land of non-living. I'm still not in the state I was before a couple of months before and I have a long way to go.

At least I found some energy to write today and hope I will find some again tomorrow.
We no longer ask 'how was your day' instead we ask if there were some good hours or minutes.

Cherish and pamper your health, if you got it in good shape. It's priceless.

This was the one exception where I write about my illness on this blog. Now you all know why she hasn’t been keeping it up.

PM me for my snail mail address boxes of milk and white chocolate are SO appreciated! ;-)


B. said...

Hoi Tink, veel van wat je beschrijft heb ik ook gehad al had ik niet wat jij hebt en lang niet zo erg. Maar ik kan me goed voorstellen wat een !@#$gevoel dat is. Ik wens je veel sterkte en zal je via email even om je adres vragen ;-)