new year spoonie assessment

Last winter didn't look terribly hopeful but it was a huge step up for me from winters before. This winter is amazingly way better than so many years past. What changed this year? Here you go, have a power point review.



The biggest thing was finding out I'm allergic to acetaminophen. I've been living on benadryl for so long, dealing with so many other reactions, never occurred to me I might be having a continual reaction all this time underneath everything else. I'm already banned from ibuprofen, so there's not a lot I can do any more about home pain treatment. Requires being smarter than ever before, avoiding impending consequences, not being stupid about overdoing and overextending myself. Pills are a quick fix anyway, not a cure that keeps you from crashing sooner or later.

The next huge thing was ASTYM, all the new rage in fibromyalgia treatment, based on postitive results with athletes. I spent 4 months in grueling ASTYM therapy, deep soft tissue massage for the purpose of breaking up hardened scar tissues for better blood flow and muscle control. That alone has dropped my pain level enough to exist without daily pain meds, hooray! I still hurt, and the pain levels can still shoot pretty high, but I've been given 'permission' now to do what I always found instinctual- dig deep where it hurts. Pressure points are key, and then stretching and exercise are crucial.

The biggest difference from last winter to this that I'm noticing is a serious lack of migraines. I spent last winter with the shades drawn and barely able to cognitively function, much less read. This winter I'm doing just about anything I want with minimal occipital nerve problems and greatly reduced nerve reverb overall up and down my spine. Again, still have some interesting pain, just way easier to live with. A neurologist has finally documented the body-wide dysesthenia I developed last winter as healing from an ancient car accident. He said nerves can take years to heal, especially after being thrown violently out of a car, and being very ill with lupus and diabetes and several rough viruses along the way stopped the healing process for awhile. I'm still avoiding alcohol, don't smoke, eating healthy, trying to get plenty of rest, staying well hydrated, exercising regularly, and not going over my fatigue limitations. I am trying to keep up higher protein and healthy fats in my diet since protein builds tissues and fats are vital for nerve health.

I am currently having a stiff knee/leg from carrying a 15 pound baby around while she was teething, but nothing swelling up so it's most likely frogged muscles from muscle strain. I see a chiropractor once a month and take zyrtec daily to help me sleep on the advice of two different doctors. The zyrtec also helps my body stay calm when it wants to over react. An allergist diagnosed me with autoimmune reaction disorder, says it's common for people like me to just start hyper reacting to everything, so there you go.

If you're a spoonie running into this, I hope it helps. Most insurance and medicare will pay for the ASTYM therapy, but you have to ask your doctor for the referral. Good luck with your stuff.

Hair- I gots it

Deciding to grow my hair out last winter was a big deal. Between years of illness and meds, I wasn't sure I wouldn't go bald and stay that way, but I've created a real turnaround and big things are happenin', one of them being HAIR, yay!

I'm going to see if I can grow it out down my back, and if I can continue to stay healthy, maybe next year I can get some pink streaks and blue tips and whatevs. Because Pinky needs to play.

The Boy Who Went Back To Bed

Years ago, I think on the Captain Kangaroo show, there was a book about a boy who was having a bad day, so when he came home from school for lunch he went back to bed and started all over. He took his clothes off and put his pajamas back on and literally went back to bed for a few minutes. Then he got up and got ready for school all over again and insisted on eating breakfast again instead of lunch before he went back to school for the rest of the day.

A number of years ago my dad said something I have never forgotten. "If I knew then what I know now, I'd have gotten more rest."

This is one of those days. I'm stuck in a brunch state of mind, even though I've been up since 3 a.m. and it's almost 11 now. I am in no mood for lunch and whatever the afternoon brings. I want to go back to bed and start all over again, I want another shot at breakfast, and I want to move the hands on the clock back and feel like I got something real done this time.

Recovery days are like this when you're a spoonie of any kind. Yesterday I made an extra trip into town for someone during an emergency and then sat in a waiting room for a few hours. Doesn't sound too hard, you say. Well, yeah, unless you've had multiple spinal injuries and ongoing fibromyalgia spasms from the base of your skull to your knees. I don't sit well even on my best days, to put it succinctly, and it wasn't the sort of event where standing around or walking hallways would have been any better. Nothing triggers my whole body harder than sitting for extended lengths of time. Extended, for me, is anything beyond 15-20 minutes. I don't sit in movie theaters or church or long car trips. Sitting is evil. 

I learned long ago that recovery days are crucial to getting back on track. If I want to be any kind of productive, I *have* to take days off and rest. I *have* to allow my body time to reset back to something besides fight or flight response. If I get impatient and try to keep going or do more to make up for 'lost time', I wind up taking more steps back until I wind up in bed. I used to take handfuls of pain pills and muscle relaxers to keep doing what *I* wanted to do. Joke's on me, pills are really hard on livers and kidneys and immune systems. I had to stop that.

So today I'm grinding through depression and self recrimination and all that other negative stuff that only makes things worse. I'm trying to look out my window at the pretty day and think about a second breakfast for lunch sounding nice and another Harry Potter movie being a good distraction while I 'rest'. I'm so grateful we have washing machines nowadays, at least I can get all the laundry caught up with minimal effort (compared to hauling water and using a wringer and hanging things on a clothes line, or even having to drag out to a laundromat, all of which I've done in my life). I can piddle my way slowly through a few dishes (I've never owned a dishwasher) and poke around the kitchen putting supper together later. But I really can't do much more than that if I want to have a much better day tomorrow. It's either take a real day off today and spring forth tomorrow or tolerate a succession of mediocre days. The hard part is being patient, because I had other things in mind to be doing with this day.

I'm spiking my pain level higher sitting here typing, but I just needed to gripe before I let go and go back to bed and start over. I'm actually looking forward to some bacon and cream of wheat for lunch. Maybe after I get back up I'll meander outside and let my chickens out of the pen and then fold a load of clothes. Getting a load of laundry done cancels out the day being a total loss, right?