Pain, a Day In The Life of my MCAD

Wow  what a day. Woke at 3am on the 5th of November, mid histamine rush/dump. See my post about 4AM for more on what that is like. I was shaking, flushed, itching, etc. Just woke again after falling asleep after dinner for a few hours,  to my heart pounding, feeling like I am mid histamine dump as it does every morning at 3 or 4 AM, but it is only 11PM. Ah well, I know how to treat it.

My body is on fire with pain, and it occured to me that I do not often discuss this aspect of Mast  Cell Activation Disorder (MCAD) The pain is bad especially in my legs but also my hips, arms, shoulders neck, and head. Even my feet. Yup, head shoulders knees n toes, like the song. My skin itself has that acid-skin feel I have come to associate with high prostoglandins, and that used to make me wonder if I had some form of autism spectrum disorder because it makes it feel like the world is just too, too as my mother  would say. Too overwhelming, loud, bright, and prickly.  I do not share this merely to vent or complain. I don't want pity, and thus do not speak of the pain most times. But in speaking with others who have similar mast cell disorders, I realized most of us tend to minimize our chronic pain component, and most people do not even realize it is an issue we face. Including many doctors.

I have had this happen frequently my whole life. I honestly do not remember a pain free day, tho I suspect I have had them, especially as a young child when I was very physically active. But some days are almost pain free, and some days it spikes. In my twenties, I was often in the ER writhing in pain and begging them to figure out  what was wrong. They came to believe I was seeking pain meds, tho I kept telling them no, the pain meds made everything worse.  It was terrifying until I realized that the doctors were not finding answers and it would be a chronic condition. I went through the grieving process for the hope of a normal life. I learned many techniques for coping with chronic pain, Some of which I use to this day, but most days, lately, it is tolerable.

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Later in the day, Patch took me to Staples for new fine tip pens, as mine had run out of ink or been lost. This was a trip where we should have brought my wheelchair and did not, or I should have simply let Patch get the pens without me. The store was full of triggers that I have yet to test my Respro mask around. It was also large, and I have not been able to walk much lately, so was a lot of exertion at once. My legs have been getting weaker since my doctor told me to hold off exercise for now as she believed it was triggering me. Plus the stress of going somewhere new can be challenging. If I'm triggered will I make it to their bathroom in time, or worse will I have to epi in the middle of a store? I try to plan for the worst, hope for the best.

By the time I walked out of the store I felt my energy quickly deplete and my pain in my legs suddenly spiked. I slowed and tried to take my time but kept feeling worse and just had to stop. There was no option about it. My legs just refused to work and I feared I might fall.  in the middle of the walkway, right in front of Staples, walking to the car I could see just out of reach, but I was stuck. Patch went and got the car while I took an UNplanned breather and then inch by inch forced my body to move toward the curb cut. As I was about to get to the curb I lost my balance and almost fell due to the slight downward slope of the curb cut into the street. Glad I did not fall, I am still healing from my last time.

Patch took me home for some time in the hammock and i started to flush, itch, etc. so took a benedryl, then kept calm by drawing about the word "Joy" in my sketch book with my new fine tip sharpies. By the time Carlie arrived home, saw I was still a bit flushed, and told me to take another benedryl, I had a feeling I might not get the blog entries I'd almost finished earlier in the day uploaded, nor art completed to my satisfaction. The second benedryl helped a bit, in that my flushing reduced and some of my other symptoms, but the pain continued to increase. Carlie helped me out of the hammock and back to bed. I ate dinner in bed while finishing a blog entry for my art blog Http://PeaceFullCreations.blogspot.com

I quickly fell asleep after dinner and then woke at 11PM in the midst of my body doing MCAD thing again. Mast cell degranulation truly sucks eggs.  I know this blog entry will come across as complaining, but I think part of raising awareness about this disease and learning to cope is honesty, even about the hard things.

If you experience similar pain, what are your successful methods of dealing with it?  Most NSAIDs and pain killers trigger mast cell degranulation, so I usually just grit my teeth, do relaxation exercises, eliminate triggers,  and try to distract myself as much as possible.

Today I put myself in the path of many possible triggers from stress, to inhaled, and even possibly the time sitting out In the sun, although it was a nice day out and not to hot. Sometimes life looks like a gauntlet of Mast cell triggers.Normally, I am at home, avoiding triggers, eating my "Safe" foods, a topic for another entry, and generally laying low. A big day for me is one with a single outing. Let alone a day like i listed above. But one has to push through at times. Tomorrow is going to be a day I have to rest, regenerate and revitalize. What are your post/mid flare tips?

(edit 11-12-13: edited for spelling, grammer, and a few clarifications such as that day is not my normal every day level of activity, in fact it was abut 3 times an active day for me. It took me 3 days to recover enough to just walk around the house and resume my "normal" level of activity)