Technical Difficulty Please Stand By

I have Fibro not CFS but this totally describes my brain when things get bad.

FibroM.E.-Awesome

A couple of weeks ago, I lost my head. It happens sometimes.

I call it spaghetti brain, and it happens when I’m in a crash or when I’ve overdone it somehow. My body gives out, and then my mind follows suit. I had a stressful few weeks and my mental agility dulled until I could hardly say my own name without stumbling over it. It’s difficult to explain, but when these cognitive issues flare up,  trying to think and speak makes me feel like a car with the gas and the break petals pressed to the floor at the same time. My thoughts come fast but fragmented, my words emerge slow and tumble over each other, and half the time the wrong words come out altogether. My brain feels like it’s on fire, and so many times I’ve had to just sit in a dark quiet room to cool it down…

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A Doctor’s Letter to Patients with a Chronic Disease

Pain. I Has It.

ProHealth.com/Rob Lamberts, MD/July 31, 2013

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?   How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?   How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t…

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April 21st, 2013

Been trying to keep moving as the doctor recommended. Seems to be helping the Fibro, making it easier to pinpoint the joints that bother me and when they do. Hips, the left being worse than the right a lot of the time, the second “knuckle” of my right big toe, both spots radiate outwards. This is when I’m walking. I start to limp pretty fast. Hips hurt pretty equally when sitting or standing for any length of time. Knees will throb also when walking. Sonetimes the ankles. Hands of course, right wrist has been of particular concern, bought an elastic type “brace” for when it acts up. The upper back, into the spine, radiates out across the shoulders and underneath them, neck is stiff and painful. Need some masage I figure to loosen the pressure on the nerves. Been a bit of a rough week.

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March 2nd, 2013

A lot of hand and wrist pain today, I’m sure it had a lot to do with the fact I have taken up embroidery. Very tired. Two times today I all but fell asleep in my recliner. The first time I managed to get the little guy to sleep so I could lay on the couch. Second time was just after he went to spend the evening with Nana and Pops, so I got a good two hours in there. Having some major hip and knee pain on my right side, from what I can tell it is behaving like bursitis. I suppose I should get to the doctor. The two small spots on my right arm that I wasn’t sure if they were just pimples or not are definitely little psoriasis like patches. They are small but they are red and flaky.