I am getting so sick and tired of always seeming like I chasing the sleey bug at night, i just lay there til 3 or 4 in the morning then i wake at 5-6 am and i am so tired i cant even hold my head up, often going back to bed and sleeping for another 4 or 5 hours..missing the better part of the day and getting NOTHING done! feeling like i am letting my husband down and faultering on my household duties. Luckily he understands this cycle, AND chiari (heck he seems to understand better then i do at times).
then the days where i have appointments and i can not go back to sleep and force myself to stay awake--thats interesting (lol), and once i do get home and settled the first thing i do is sit on the sofa and POoOoFF I am out in no time flat--then i hear the door open or feel my husband touch my hand and i wake slowly and Uhhh, guess what honey-- its left overs tonight or you are making dinner (so sorry i tried)
its just SO frustrating!!! everytime you seem to move one step forward you always seem to take two steps back!.
ok my little venting ranting thingy is over...now back to your regularly scheduled reading ;)
I've been finding myself doing this to but i thought meds and pain causing it. NS is screwing with my meds to give last try before doing last ditch effort before 31st to schedule decompression, makes life interesting. Only thing that helps me right now is sometimes my heating pad, fan on my face and my cat on hip
I truly understand the way you are feeling. We all do. Unfortunetly I had taken narcotics for too long & they ruined my sleep patterns. I wouldn't even fall asleep until 7am & then made myself get up at 2pm when my daughter would come home from school. I had no life, couldn't keep appointments, and lost some friends because I couldn't do things with them. I was just surviving. I now take non narcotic pain medication, that doesn't cover my pain & take Trazadone & Amitriptylene at night to sleep. I don't think anyone except another Chiarian understands all we go through just to survive.
Chiari definitely has an insomnia component and an exhausion component. Put together they are awful. You pretyy much summed up my days...Hang in there.
beeba-- i am well in "recovery" from decompression- LOL was decompressed in Oct 09, hot baths OMG no they drive me nuts and my muscles in my entire body get extremely tight..and heat sure doesnt help my "unknown" tremors...(doctors know i have them they just cant figure out why)
tracy i take the meds too and youd think theyd knock me out...HA sometimes i think they just wake me up more...crazy..i even take my meds as early as 2 hrs before bed and still can fall to sleep....
one would think, that this far along a happy medium would be met...
but alas i remain as i was told a "INCONSISTANT" "DIFFICULT" and "NOT-TEXTBOOK" patient, i guess that means iam difficult to treat because some of my problems are not constant like my tremors i dont have them every day 3 times a day or they are not triggered by lights noise etc.. add to that cervical stenosis,hydrocephalus (that is tempramental) and top it off with sight, stability and tremor issues mix in doctors who HAVE NO CLUE!!!...and what do you have??
One mighty worn out lady who continues each day to find success by the end of the night!,. Atleast I have a primary doctor who truly cares, so it could be worse! With her and my husband on my side- i can fool myself over and over again that iam just peachy keen ;)
Just frustrated is all...once i get some consistant sleep again and this darn headache goes away i am sure i will be okay again------------------------------------------------i think ;)