What is a reasonable quality of life?

My other post about the efficacy of my meds left me thinking about what is and isn't reasonable for a CPer to be able to do. Do you all have goals with your PM docs or goals for yourself? Such as "walk around the whole block" or "go grocery shopping"? The ultimate for me would be to be able to exercise at the gym, elliptical machine, treadmill, or even swimming since it's such a more gentle exercise. But most days I don't even think of those things, I think of making it through the absolute minimum that I can get by with physically.

What does everyone think? Is it even reasonable for me to think of being able to exercise again, or is that just a pipe dream, at least until I'm "cured" (and I say that tongue-in-cheek)? Should I be able to do these things, is that reasonable to expect of my pain management? I cannot walk more than the small strip of sidewalk up and down my front yard, so when I'm out with my kids they have strict boundaries where they can go so that I can see them. Yesterday I was thinking I'd love to walk around the block with them.

Being relatively new to this, I really don't know what is reasonable to expect and what isn't. I know it's all individual, but I'm really looking for some guidance here. Thanks!

JPJR50, is your pain managed adequately for you to be able to do that? My job is not an issue for me since I work from home, I can basically sit in bed and work if I want to (which I do more often than not). I do have a fair amount of travel but my boss works really hard to keep that down for me.

My goals have to do more with my kids and family. My kids are 3, 5 and 8 and I do NOT want to let this affliction prevent me from being fully involved in their younger years! I have problems attending their events due to too much walking, taking them places (same reason), and just generally enjoying them. So is it reasonable to expect to be able to do those things? Mostly it's the not being able to walk without excruciating pain for more than 5-10 minutes. But I'm not sure, maybe that's a pipe dream. If it is, I'd rather come to terms with it now and perhaps look at some other mobility solutions.

I can't figure out how to get it over here either and Peter use to put some of the better articles like that on the front page of the forum but they have not been changed in awhile.

It's one of the truest articles I have seen. I don't know if I can link the huffpost without ppl having to have a Facebook to read it but maybe,I will try.

Goals depend on what we have to start with, what's possible, and our reasons for fighting. You have kids. I have old kids and little grandkids. We don't get to stop when we have others who need us.

My pain doc's goal is for me to not come in again until December when I need the new Norco script. I understand. I've been in about every 6 weeks for new injections or ablations, trying new meds since getting out of nursing home and hospital after breaking my neck.

Yesterday evening I overdid a mushroom hunt for sheep's heads in our woods with dil and grandsons. I had a hard time stepping over logs, fell once. 2 hours through rough going was too much. I'm paying today.

My goal is to not get worse, gain a little strength, stay useful for the kids. To do that I need to stop some of the pain. I know it's not nearly all going to go away. The burning, freezing, stabbing and spasms in the legs and hypersensitivity to touch is permanent. I would however, like to stop the trapezius and biceps stabbing spasm pain. So far, PT, meds, injections and ablations have not helped. It's off to myelogram next, I guess, although I'm scared silly about that because of scoliosis and chance of autonomic dysreflexia that I get from pain.

I'm scared of getting into my little hot tub because it's hard to to get out. But nobody's home all day and evening, so I'm trying it. It's good for a few minutes of exercising in the morning and evening, stretching and heating some of the muscles that are freezing cold and painful. It's only a little triangle, fits into a 5'x5' spot. I originally got it for fibromyalgia and spinal arthritis. I can walk much better if I get my legs warmed up with a little kicking. Going to the pool would be good, but mine is too cold and the Y is a drive. I tried aqua PT, but insurance denied more treatments after 10 total.

I'm feeling negative and pain is up again. It's time for the noon tramadol. You might try that because it raises serotonin, the happy neurotransmitter chemical.

Okay guys, I'm working on getting that article from HuffPost on here. As Vickie has said, it's an amazing read about the difference between living with and just existing with, CP.

Exceptional read.

HuffPost seems to only have a video on it and I can't as of yet pull up that terrific article. I've always probs accessing their articles in whole.

Gimme time gals....












M.

Good posts, one and all!

Quality of life is very different than just slipping by on existence.

We are fully dependent on the integrity, and perhaps even whim, of another person with the power to control or manage our meds which in turn allow us to control or manage our lives.

We may live one Rx to one Rx,....one month to month....

I do work out (it's my saving grace, even though the housework suffers, my sanity improves). If I can do "something" around the house, I don't have to do "everything," but yes I'll pay for it....

I have absolutely no problems accepting that I'll have both good days and bad days,...what makes it tolerable is knowing there's a plan of action.

Having that plan modified without my input, however? Well,...then for me, that disrupts my quality of life.











M.

Merrida, what type of working out are you able to do?

Vicki, thanks for posting that. I have never applied for disability.

As I grow older...I am accepting of more pain in my life. At this point I am worn out by "trying to find out exactly what is wrong". Also want the cooperation of my doctor to use the drug Meloxicam because it is very helpful for me to have. It is an aspirin compound.

Am too beat to say much else. Good luck all.

Ahh, but see, that's where interpretation comes in.

I'm walking (on a treadmill) but have difficulty on the street. I'm okay w/ carts in the grocery store because I can hold onto things.

I can strength train because it's I'm very precise about the control and movement of my body. It's what I did for work for many years (personal trainer). It's natural to me (body movements). It makes me feel good.

I cannot bring the groceries up from the car or unload them. I have problems doing the laundry, unloading the dishwasher, and vacuuming or sweeping can send me sailing for the rest of the day.

Within the structure of a controlled environment, such as a gym, and knowing proper body mechanics, ... movement is actually safer. I'm more apt to trip walking my big dog in the bumpy back yard! :)






M.

Btl as we said QOL is individualized and changes throughout the journey. Older CPers, those doing this longer not age, have gained different prespectives as we came to terms with being inflicted with a chronic illness. We have discussed many times the movement through the stages of grief in relation to CP. As you learn how to move past the shock of it all you will also push back harder to have semblance of normalcy.

Takes time, takes good Drs, and therapist, supportive family and friends.

You will get there.

That's the point you get as close as you possibly can but maybe not the same way and means. You learn to adapt. You have disability not inability. For instance, I do all my own laundry and and housework and I had 5 kids so it was a lot. Still is, I have a teenager here now. I could not have done it as a normal person would have so I adapted. My brother built a platform raising the dryer and I use a cheap computer chair with wheels that has no arms to hinder my movement and raises and lowers easily, also use it to do dishes. Instead of my pots and pans being under the cabinet they are hung on a rack over the stove. Mopping isn't done with a mop because that's the hardest thing for me, swinging a mop, I use my feet and a towel from my chair again if it's a bad day.

My good days I make meals and freeze for the bad days. It's not harder to make 2 meatloaf then one. I shop at night when the store is less busy and clerks have more time if I need help, lean on a buggy or use scooter if I need to. There's many things such as these we learn to save energy and prevent issues and it becomes second nature after awhile. There's not much I can't do I just have to give some thought on the best way to do it.

When my kids were small and I felt like they were getting cheated I really had to use my imagination to create mom time. We had so many awesome picnics albeit in the backyard or even the porch, we built indoor tents around my recliner and had campouts. One night a week they got to do dinner and yes I ate a lot of pb&j until they got older and more creative but those were some of the best sandwiches I ever had because they were made with so much love, I wouldn't trade a one of those.

My oldest was not quite 10,then, 8,6,4, and well the infant wasn't much help back then but as soon as she could she got in there.