Re: Joe, low back, holiday pain, people without pain, helpers

[Guest guest]

Dear Joe,

I could relate to a lot of what you said in your 12/26 note. Among other

things, I have excruciating low back, mid back, and neck pain. 10/31/01, I

had discectomy with a lumbar fusion L5-S1, L3-L4, L1-L2. My bottom 6 disks

are fused 2 and 2 and 2. They were alternating bad disc, good disc, bad

disc, good disc, bad disc, good disc. After the most recent bad car accident

8/01, if I stood or walked for around 15-30 min. in a day, I would have

excruciating pain shooting from my low back into my butt, hips, and both

legs. I had constant excruciating low back pain all the time, but the

shooting pains came depending on if I had been standing or walking. I had

been planning low back surgery due to injuries from a prior bad car accident

2/99 that left me with constant severe low back pain, but I didn't have a

surgery date yet. After the 2nd accident and all that pain that made it very

hard for me to walk once the shooting pains started, there was no question in

my mind about doing the back surgery - I kept calling and seeing my surgeon

frequently until they got me in for surgery when they had a cancellation.

After the initial surgical pain wore off, I felt much less pain in my low

back. (I have had many other problems trying to recover because it affected

the other areas of my body a lot - my muscles became deconditioned and with

fibro it's hard to get back to where I was before the surgery, I had more

knee and shoulder pain from trying to compensate for not being able to bend

my back and having different posture - bending my knees a lot to reach

anything lower than my waist - it opened up a whole bunch of cans of worms

regarding the rest of my body) I was laying down huge amounts of time and

that seemed to help my pain a lot, too - my neck even started to feel better

than it had since 2/99 because of all the rest. At first, I couldn't even be

out of bed more than 3 hours combined (split up in little bits) in an entire

24 hours. I didn't have the shooting pains down my legs much, but I wasn't

doing much either. I haven't been able to work since surgery. I still

rest/lay down a lot. I can only handle about 3-4 hours of doing non-strenous

things before my pain gets really bad and I get crabby and on the verge of

tears and I need to lay down to reduce my low back pain. Then after I lay

down, I can get up and do non-strenuous stuff for a while again. Then lay

down again....

I haven't had the shooting pain down my legs in quite a while. But during

the couple weeks around the holidays, I was trying to do more - shopping

(walking) with my paid helper and was doing more by writing Christmas cards

and wrapping and stuff like that. I feel like I can do about 1/4 of what the

average person does in the hours when they are not at work AND I can't work

either. It didn't take much out of my usual routine and all of a sudden the

shooting pains down my legs were back. I had them on Christmas Eve and Day

and many of the days in the 2 weeks around then. Not to mention the

excruciating pains in my neck and constant terrible headache related to my

neck that lasted for a few days straight. It sometimes helps if I lay down

and put blue gel ice packs from the drugstore on.

I was sad because on Christmas Eve I couldn't do the " normal " things I used

to do to help at my mom's. I too have problems standing long enough to make

most things in the kitchen. I had to lay down many times to make it through

our Christmas Eve celebrating and I was still in constant pain. At least

this year my family was more understanding about my need to lay down and

didn't pressure me much into helping with things I can't do.

By Christmas Day morning, I felt like I was runover by a truck several times

(I have fibro and often wake up feeling like I was runover by a truck, but

this was worse so I said runover by a truck several times LOL). My dad

picked me up for our 10 a.m. Christmas breakfast at his house. I was in bad

pain and had not slept much due to my insomnia and disrupted sleep. Luckily,

I didn't have to help with anything over there. I just sat in a comfortable

living room chair right away. Unfortunately, dining room type chairs (chairs

without any kind of cushioning) are very uncomfortable for me and that's

where we sat for the meal. I was on the verge of tears a couple times due to

my exhaustion and pain, but I managed to have a good time. I was invited

somewhere for Christmas Day afternoon, but I had to skip it because my pain

was just too bad. It's hard for me to do much 2 days in a row, especially if

either of them are more than 3-4 hours of my typical non-strenous stuff.

I do get frusterated with not always knowing what my limitations for a day

are going to be and when I suddenly get the feeling that I get right before

those shooting pains down my legs are going to start, so I'd better lay down

immediately. Some days are better than others. I also get frusterated with

my low levels of what I can actually do. It was easier to cope when my

limitations were not as limited as they became after my 2nd bad car accident

and my back surgery. I have gone through several health problems and car

accident injuries since my initial fibro in 1995 and it is so hard after each

new problem or set of problems to adjust to new sets of limitations and

trying to figure out what exactly the new limitations are. It seems like

they keep changing.

I also get very frusterated with doctors, nurses, attorneys, health and car

insurance companies, paid helpers, family members, friends, and everyone else

who tells you to do things that there is no way they would ever do them if

they lived even a short while in your painful shoes. It's like people who

have never experienced constant excruciating pain have no concept of what

it's like and how mean their words can sound, or how bad their advice can be.

I realize most of them mean well, but it's still really frusterating. I've

had some paid helpers since my back surgery who I swear have never

experienced pain in their lives. I can't believe how they act. Luckily,

I've got a really good helper now who is compassionate and understanding and

I can trust her. She's been coming for around 3 1/2 months. I just hope I

can keep her for a long time.

It seems like every time I find a good one, within 1-6 months of when they

started, for some reason they have to leave. They've all had different

legitimate reasons and I have a hunch the company they work for doesn't pay

them 1/2 what I pay the company. I think it is a high turnover job. But it

has been very frusterating to me. It was worse when I was even more

dependent on them right after my back surgery (no one stayed longer than a

month around then) because I would get this feeling of panic any time one

would leave. I was afraid I wouldn't find anyone else good in time. Back

then I had a really hard time on days no one came to my house. I live alone

and was afraid something would happen (like I would fall or hurt myself and

couldn't get to the phone - luckily that never happened) and no one would

come for several days.

I also had some bad helpers. One who had absolutely no compassion and seemed

to think I should do everything and she would just watch me - sometimes I

would try to show the people how to do some of the easier things once in the

beginning and on good days I might do a little bit of easy stuff while they

did the harder stuff. But just because I did a little, didn't mean I just

wanted her to sit there and watch me and not help with any of the cleaning.

Plus she got a real attitude with me that day. She didn't want to do any

work, but she wanted to get paid. And she kept asking me questions like she

didn't believe I was in pain. Repeated questions the whole time like she

didn't believe me. I hate when people don't believe me about the pain and I

was really in a lot of pain that day. Probably the most pain I had had in a

day since she started. She had been helping me for around 4 weeks and doing

a mediocre job, and still acting like she didn't have the things learned that

most people had down within a week, but I thought it was better than not

having anyone to help. I think she may have been sick that day and I tried

to suggest she may want to go home (then she could rest and feel better and I

wouldn't have to pay if she left early - there was a 3 hour minimum I had to

pay even if I sent her home early, but I wouldn't have to pay for the whole

time if she left early because she was sick.) She refused to go home sick.

But I did get her to leave after the 3 hours instead of 4 - she was upset

about that because she wanted to get paid for the whole time. But she got

less than 1 hours worth of work done in 3. I think I put up with it longer

than I should've because I wanted to give her the benefit of the doubt. I

thought about it a lot and told the company I didn't want that woman's help

anymore. I just couldn't believe her attitude that day and acting like I

didn't have pain and I should do everything while she watched. I hired

someone not from that company for a while. Now I'm back to the same company

and my current good helper is from there.

One helper who came once from a different company, the 1st one to come after

my surgery, she burned a hotdish beyond saving and broke a ceramic of mine -

I heard it drop, but she didn't say anything and right after she left I

looked at it and it had a huge chip out of it - if she had just told me, I

would've been okay, but since she didn't say anything, it left me wondering

what else she broke or if she stole anything or what. One other helper came

once and in one short outing on errands - maybe 1-2 hours, there were 3 times

I feared for my life because we almost got in car accidents (I hit the horn

one of the times to keep someone from backing into us) - she was driving my

car and going way too fast for never having driven it before. And it was not

lost on me that the reason I am in the bad shape I am in now is from two

terrible car accidents.

Anyway, I am very very thankful for my current helper and hope I do not lose

her anytime soon. She is a very safe driver and excellent at cleaning (if

anything she is too thorough/perfectionistic), and friendly and compassionate

and understanding and offering to help with things without me having to ask

for every single one. And she knows what to do and I can leave her

downstairs and trust her if I have to go upstairs to lay down sometimes. And

she doesn't judge me or act weird because I sometimes have to lay down or

suddenly need to leave somewhere or sit when we are out. And she likes

cooking things I tell her how to cook and she automatically carries in things

we bought on errands and just lots of big and little things she does to help.

Plus she's very reliable about coming on time and not cancelling. And she

doesn't act weird if I ever cry around her. She listens and understands. I

try to do nice things like once in a while we go out to eat and I treat -

it's good for me to get out and do something fun sometimes and it's good to

keep my good helpers happy by treating them to something fun sometimes, too.

Honestly, treating my good helpers to meals once in a while is what seems to

have made a difference in whether they stay for over one month. All the ones

I have treated to meals stayed for much longer than ones I didn't. I also

thank all the good ones a lot and tell them how much I appreciate everything

they do, every day they come. I try to be more positive when they are here.

If I'm having a really bad pain/exhaustion day, I've found it is better for

me to cancel and rest, than for me to risk being really crabby around my

helpers. I don't want to lose the good ones. They are hard to find.

Sorry I got off subject when I talked about my paid helpers. I just never

had anywhere I could express all that before where people might actually

understand. I really appreciate this group and being able to read everyone's

posts and being able to vent. Before I joined this group I felt very alone

in terms of not having people who fully understood my pain. I didn't realize

there were so many people out there that I could relate to and that could

relate to me. I just want to thank you all for being there. Thanks too for

any advice or support you can give me and each other.

Mara in Minnesota (About to turn 32 next Friday)

lakelover125 (Minnesota is the land of 10,000 lakes and I live across the

street from a very small lake - can see it out the window of my favorite room

in my townhouse)