Wednesday, February 27, 2013

CFS Update

It has been a crazy month.  I continued to get better.  I was driving around town, reading for an entire half hour, cooking complicated meals, walking several hundred feet at a shot, cleaning the house and generally feeling pretty darn good.  Like maybe this was finally over and I'm possibly going to get better.  This is the best I've felt since Dec 2011.  Then I ran out of methylB12.  I went through methyl withdrawal which means I have to take large dose of potassium to stop the muscle pain.  And of course I started dragging a bit.  Kid and I went and picked up the new syringes of B12 and I took the next shot but it didn't have the same effect.  In fact it was insanely painful.  Too painful.  I called the doc and arranged for an appointment to discuss alternatives.

So last week I had to drive to Cambridge to see my treating CFS doc regarding the shot.  We decided to go back to the glutathione IVs and just have the B12 in the shot.  This should reduce the pain considerably.  Then kid and I drove around a bit and had some fun.

The next day we had to get up early and drive into Boston to see Dr. Komaroff, the world famous CFS doc.  The appointment was uneventful.  He gave me crap for drinking raw dairy, was happy with my improvements and didn't want to change my treatments since I seemed to be doing well with them.

Kid and I drove to my old neighborhood to see where I lived when I first came to this country.  Yes, I'm an import from Britain.  I found the old apartment which looks just the same as when I lived there 40+ years ago.  The convenience store is still on the corner and open for business.  My mum used to send me there to get bread and milk for her.  My sister and I used to go down there for candy if we had an extra quarter.  We tried to find my old school but I couldn't remember what street it was on and I had no idea if it was even still there.

Anyway, all this activity has made me crash pretty hard.  I spend Saturday and Sunday on the couch resting.  I've been falling asleep at odd hours and haven't settled back into a regular sleep schedule.  I can't read at all.  I can't drive.  Today was the first day I managed to cook.  I had my first glutathione IV yesterday in over a month.  I had a mild panic attack in the car on the way there.  I knew I needed to lie to get out of the car and lie down.  I took a nap in the comfy chair during the IV.  My new B12 syringes showed up today so I'll get a methyl shot tomorrow.  I'm slowly recovering from the crash but it is going to be one of those slow recoveries.

I get the sense that whatever miraculous recovery that occurred after my hospital stay is slowly wearing off.  I'm crossing my fingers that this isn't the case but I won't know for sure until I normalize after this crash.  I need more patience.  I am SO done with being sick!

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