My sleep has been worse than usual because of all the political stuff plus i had a steroid injection in my shoulder.
I can usually only sllep 45 -90 min @ a time due to Narcolepsy & a brain injury.
We get together with immediate family (parents, husband, brother, sil & my super cute 5 yo neice and the new baby).
We do this Sat & Sun.
Mom asked for us to start anternating weekends to cook (i used to LOVE cooking but really havent in about 10 years).
Anyway yesterday was my turn. (Only once a month).
I made something easy. I started slicing and dicing in spurts over a 2 day period & i did online grocery delivery from Amazon fresh.
I still had troubl with sleep but managed 7 hrs of 12 in bed.
I just got up and feel like i have the worst flu ever (i dont this is just my new norm..but its the best other can relate to).
I have hEDS (ehler-danlos hyper mobility) and it attendant GI and disautonomia (hEDS feels a lot like Fibromyalgia & dysautonomia is a disregulated autonomic system where anything your CNS controls can go hawire). Was misdiagnosed with fibro and CFS/ME for awhile as tjose can mimic what i have...infact i could still have them..)
I just took a breakthrough narcotic (on top of my standard dose).
Now i have to get a shower & do my hair (which has actually been a creative project for me...my 1 non-imaginary hobby other than reading).
Time to take nausea meds & pull out the tall directors chair I use when standing is just too much.
I also haven't been wearingvmy quell device (it is kind of a super TENS minus the contractions that go around calf & helps block pain signals from nerves all over...FDA just made them retract that claim after 4 yrs on market & they can only claim knee but I -and many others- really did get all over benefit from it. I was able to not go up on narcotics and my BTP med usage dropped as did my avg daily pain. They gave a 60 trial with a guarantee it would work withing 30 days. Ceffaly /Cephaly? is like tgat for migrains and Trigeminal pain. I would totally try is if my 20 migrains hadn't converted to migraine w/o headach, TG.
Anyway. My husband has asked that i stop complaining about whatever is going on with me so i really dont have a friendly ear. When he complains to me about pulling his back doing whatever I kinda just want to flip him off these days but dont want the spoons & trnsion that will cause. It really sucks.
So drinking some non cafinated tea & waiting for nausea and pain meds to kick in.
I dont produce enough antibodies either CVID immune deficiency, so in the days of COVID waking up like this is extra scare cause COVID + me = bad outcome.
Just needed a place that would undrrstand. Did a lot of support boards (moderated one pre tBI) on Narcolepsy & it helped & helping people helped so I'm trying again with this spooniy board.
Feel free to as ?'s about stuff in profile or comment
Thanks for the ear
#Ehlers -danlos #disautonomia #ImmuneDeficiency
#Pain condition #Baddays