really have not wanted to write in awhile. just living daily is completely wiping me out. do not get me wrong, i am glad i had surgery. i have found relief from many of the headaches i had. but as so many with eds and pots have found, you fix one thing and something else rears its ugly head. this is where i am at now. and honestly i did not want to write. did not want to hear myself talking about more problems. did not want to imagine people reading and thinking, "oh here we go again!" the reality is though i started this blog to inform about our family as well as educate on chiari, and now eds and pots. to be an honest place where those like our fam can find comfort in knowing they are not alone. and for those who are healthy and thriving to be thankful and rejoice in that.
can you imagine waking every morning with the fear of stepping out of bed? some of you with chronic illness may understand this. i lay for at least 10 to 15 minutes just contemplating getting up. not because i do not want to meet the day, but because all the way from my toes to the back of my head i can feel the pain. thankfully once i am up for about an hour some of my joints loosen. but some days i wonder if my legs will support me. the little cries of chan saying "mama get up!" encourage me. the dog pacing back and forth needing to be let out, well force me. so i do it. grateful to have many reasons to keep dragging my body from bed.
since surgery i have a new little quirk. every time i move my head even a tiny bit, i hear crunching. all day and even through the night this sound fills my ears. i have to say at moments it is maddening. it is like a chip bag be wrinkled in your head. and if i move to quickly i get that horrible pulled neck muscle up through the back of my head. my neck now cracks on and off throughout the day. i struggle daily to not let this constant noise in my head get to me. i also think the nerves in my scalp are over sensitive. my head feels as if i have a bad sunburn. i am praying this goes away as the nerves begin to heal.
i have had 2 pressure headaches since surgery. not sure what causes them but believe it may be due to my csf levels. dr duranni has ordered a flexion/extension mri for when i see him in december. all i can say is these headaches are the worst pain i have ever been in. your head literally feels as if it will explode. i feel light headed, throw up, and basically just lay in bed moaning. poor tim last time kept bringing me hot rags for the front of my head while i laid on a heating pad. and i am not exaggerating when i say it hurts to even speak or listen. these are moments when i rely on God the most. my only hope in these moments is an eternal place to rest. and true joy when the headache passes and can be with my family!
each day i am learning a little more on how to deal with my new range of motion. driving is hard, and going out is exhausting. today tim told me again to slow down. i told him it is hard for superwoman to hang up her cape, and it is hard for me too. but he is right...i have to not push myself. i do so love being out though! being with friends and the world makes me so happy. we are learning to be content though within our own 4 walls.
tonight i woke up with a numb hand and a throbbing arm. my head was spinning. even though i was sweating, i was shaking from being cold. slowly i have started to feel better and now i sit here typing. soft restful music is playing and i am nervous i will be tired today. along with healing we are still fighting for our house, not sure if we will be able to stay. tim is working long hours, and is trying hard to keep up here. bills, dishes, and laundry stack up daily. we have learned to look past most of this. we have learned that a family movie, reading a good book, and eating dinner together are important to us. please know i say all this to show my heart. so many of us have tough roads, but i have found with Faith and Hope we can get through it. if we cry out to Him, He will answer. Love this song...brings me truth!
Plumb "Need You Now"