Hi Everyone, I have been away from here since about the beginning of June.
I have been trying to deal with "life". Things are not going so well and I need to know if any of you who (sadly) also walk in my shoes feel the same way I do or if I am just loaded with self pity and need a swift kick.
I have been fighting for MONTHS to live a normal life of waking up at a set time and going to sleep at a set time. I say fighting as it IS a fight for me. I have days ( at least 4 days a week ) where my pain levels are so high that my pain meds don't touch me and I yell with every step I take. I do as much of my housework and errands at the first part of my day as I can as it is the second part of the day that the pain gets out of control.
It does not matter if I do nothing - the pain still goes high the second part of the day. I have tried everything at this point except surgery. Surgery is not a option for me as the Drs tell me they can't assure me I won't come out worse then I am now.
When I sleep my back and knees spasm so badly that I am in pain while "sleeping". I do have meds to take for them that works but they make me sleep for 9 to 10 hrs and they take aprox 2 hrs to start to work. They are very strong meds. I would never dare drive or anything while on them. So right there shoots about 12 hrs of my day, not even counting the 1/2 of the day where I am in such pain (that these night meds don't touch) that I try not to move any more then I have to. I am living my life around the pain and around the pain meds. Truthfully this STINKS!!!!!!!!!!!
IF I could lay down when I need to and sleep when my body requires it I would be in a better mind set. But too many people "require" things of me that make me have to force myself to get up and go when my body is not ready.
I just don't know what to do. I have tried so hard to force myself to get up after 8 hrs of sleep for a few months now and I just sit and stare or fiddle around not getting anything done as I am still SO tired/drugged.
I have been over all of this with my Drs. We have tried TONS of different meds trying to find a middle ground ad right now I am at the "best" when all things are considered.
It upsets me that I am still expected to live a "normal" life. If I where in a wheel chair or something like that I would not be expected to do the things I am, but since I am a walking "cripple" people still expect me to live a normal life and be able to help them.
Example: I can't not guarantee anyone I can be any where first thing in the day as I have NO clue what kind of night I will have the night before, yet I am still the only one in my family who will take my brother for all his Dr appts 2 hrs each way and his Drs are all in only in the mornings. The drive wrecks my back and knees, as all total I end up driving about 5 hrs, plus walking miles through the hospital with him for testings and stuff, plus I have to gt up at 5:30 to 6 AM to get him there. Which means I go to bed at like 7 PM to allow my meds to work and to get sleep and to get the meds OUT of my body so it is safe for me to drive him. I have to take him to his Drs on Oct 1st and I am already DREADING it.
A part of me wants to tell everyone to figure it out for themselves but they make me feel so so so bad.
WHEN I am allowed to control my own sleep/work/drive times I don't do too bad. I get about 6 hrs a day in where I am productive and have do able pain levels ( I am never pain free) where I can plan my house work, chored, errands and such within my pain limits. Then I spend the rest of my day doing easy things.
I am just very very frustrated right now.
BUT no one in my life seems to get it.
I am feeling "depressed" over all of this as I have tried so hard to be "normal" and I feel so yucky.
I don't know if I am just being too soft on myself and I need to get over it or if I need to give up the "dream" of a normal life and tell everyone else to get over it.
Now aren't you all just thrilled I finally updated here? lol - sorry for being so negative
NOTE* My pain meds are:
Fentanyl patch 75 mcg every 48 hrs.
Oxycodone 5 mg - a max of 8 pills a day allowed
Bedtime flexural (sp?) 20 mg and Etodolac 400 mg
L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.