Re: I need help dealing with family and life's frustration

[Guest guest]

Oh ...I am so sad to hear what you are going through. I wonder if

your parents just can't bear to let themselves know that this is as bad as it

is and that it isn't something that you can just " buck up " about..it is easier

for them to believe that. This doesn't excuse their lack of understanding

but may explain it a bit. I pray that there are some you CAN talk to who

understand while there is nothing they can say that will help, listening and

empathizing is at least of some comfort. Sending hugs and wishes for further

recovery, Randee

In a message dated 12/29/2008 9:36:20 P.M. Eastern Standard Time,

rutherford.kris@... writes:

I have been talking with a doctor and it seems to help for a couple of

hours. I've even tried all types of anti-depression meds but they

effect my walking ability in a big negative way. The doctor is just

hoping that in a month when I move back into my apartment, and away

from my parents everything will be better.

But how does everyone else deal with this? Deal with knowing there's

nothing that will heal you? Deal with knowing that slowly your

condition is getting worse? How do you keep fighting to make your life

better?

>

> Oh Hon, I am so sorry your Parents aren't supportive. That would

be awful.

> {{{hugs}}}

>

>

>

> I was wondering if you could be suffering from depression. Have you

talked

> with a doctor about that possibility?

>

>

>

> Anne

>

>

>

> _____

>

> From: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

> [mailto:_tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord ) ] On Behalf Of rutherford.kris

> Sent: Monday, December 29, 2008 5:32 PM

> To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

> Subject: I need help dealing with family and life's frustration

>

>

>

> I'm 25 years old and need help with how to deal with family. I have a

> tethered cord and been thru 4 surgery's. Each time it only took about

> 6 months to recover and be up walking again but this last one has

> taken over 2 years of full time PT. With my new PT program I am

> FINALLY showing faster (Still slow for me) signs of improving but

> still on a walker.

>

> What is difficult is walking up every morning knowing that everything

> I do that day is going to be difficult. And when something no matter

> how small it is goes wrong or is harder I get frustrated and my mood

> changes. And when that happens I snap when my parents tell me to " get

> over it " or " move on, your frustration is making it worse, you are

> making your life harder " Basically my parents no matter how much pain

> I'm in, how little of sleep I got or how hard it is for me to take a

> step, want me to suck it up, move past it and be happy/positive/ step,

> But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

> day to walk again and I'm at this point " Is it really worth all this

> frustration "

> I'm sorry but if you are not dealing with a TC you have no idea what

> we deal with every day. So how do I get this point across to my

> family? Since they feel they know exactly what I am going thru since

> they have been going thru this with me since I was 13.

>

> I need help because I'm really tired of being in a constant shitty

> mood because I have been told by my parent that its my fault I'm still

> battling recovery due to my frustration. Soon I'm afraid I'm just

> going to give up!

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Yahoo Mail. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025)

[Guest guest]

Oh Hon, I am so sorry your Parents aren't supportive. That would be awful.

{{{hugs}}}

I was wondering if you could be suffering from depression. Have you talked

with a doctor about that possibility?

Anne

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of rutherford.kris

Sent: Monday, December 29, 2008 5:32 PM

To: tetheredspinalcord

Subject: I need help dealing with family and life's frustration

I'm 25 years old and need help with how to deal with family. I have a

tethered cord and been thru 4 surgery's. Each time it only took about

6 months to recover and be up walking again but this last one has

taken over 2 years of full time PT. With my new PT program I am

FINALLY showing faster (Still slow for me) signs of improving but

still on a walker.

What is difficult is walking up every morning knowing that everything

I do that day is going to be difficult. And when something no matter

how small it is goes wrong or is harder I get frustrated and my mood

changes. And when that happens I snap when my parents tell me to " get

over it " or " move on, your frustration is making it worse, you are

making your life harder " Basically my parents no matter how much pain

I'm in, how little of sleep I got or how hard it is for me to take a

step, want me to suck it up, move past it and be happy/positive/smile.

But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

day to walk again and I'm at this point " Is it really worth all this

frustration "

I'm sorry but if you are not dealing with a TC you have no idea what

we deal with every day. So how do I get this point across to my

family? Since they feel they know exactly what I am going thru since

they have been going thru this with me since I was 13.

I need help because I'm really tired of being in a constant shitty

mood because I have been told by my parent that its my fault I'm still

battling recovery due to my frustration. Soon I'm afraid I'm just

going to give up!

[Guest guest]

I have been talking with a doctor and it seems to help for a couple of

hours. I've even tried all types of anti-depression meds but they

effect my walking ability in a big negative way. The doctor is just

hoping that in a month when I move back into my apartment, and away

from my parents everything will be better.

But how does everyone else deal with this? Deal with knowing there's

nothing that will heal you? Deal with knowing that slowly your

condition is getting worse? How do you keep fighting to make your life

better?

>

> Oh Hon, I am so sorry your Parents aren't supportive. That would

be awful.

> {{{hugs}}}

>

>

>

> I was wondering if you could be suffering from depression. Have you

talked

> with a doctor about that possibility?

>

>

>

> Anne

>

>

>

> _____

>

> From: tetheredspinalcord

> [mailto:tetheredspinalcord ] On Behalf Of rutherford.kris

> Sent: Monday, December 29, 2008 5:32 PM

> To: tetheredspinalcord

> Subject: I need help dealing with family and life's frustration

>

>

>

> I'm 25 years old and need help with how to deal with family. I have a

> tethered cord and been thru 4 surgery's. Each time it only took about

> 6 months to recover and be up walking again but this last one has

> taken over 2 years of full time PT. With my new PT program I am

> FINALLY showing faster (Still slow for me) signs of improving but

> still on a walker.

>

> What is difficult is walking up every morning knowing that everything

> I do that day is going to be difficult. And when something no matter

> how small it is goes wrong or is harder I get frustrated and my mood

> changes. And when that happens I snap when my parents tell me to " get

> over it " or " move on, your frustration is making it worse, you are

> making your life harder " Basically my parents no matter how much pain

> I'm in, how little of sleep I got or how hard it is for me to take a

> step, want me to suck it up, move past it and be happy/positive/smile.

> But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

> day to walk again and I'm at this point " Is it really worth all this

> frustration "

> I'm sorry but if you are not dealing with a TC you have no idea what

> we deal with every day. So how do I get this point across to my

> family? Since they feel they know exactly what I am going thru since

> they have been going thru this with me since I was 13.

>

> I need help because I'm really tired of being in a constant shitty

> mood because I have been told by my parent that its my fault I'm still

> battling recovery due to my frustration. Soon I'm afraid I'm just

> going to give up!

>

>

>

>

>

>

>

>

[Guest guest]

I might not be much help, because I've been told that I'm way too easy going and

upbeat. I'm going to try anyway.

Life sucks. How's that for a pep talk?  )

Pain is awful to deal with, and it makes me so tired. But the way I look at it

is this. I can be mad about being handed a life filled with physical

difficulties, but what will that get me? It gets me a life filled with physical

difficulties and then I'm angry on top of it. Why would I want to add misery on

top of pain? And that has nothing to do with me wanting to be positive for those

around me. This is 100% selfish. I don't want to be miserable if it won't get me

anything. I'm all for throwing a temper tantrum like the world has never seen if

it will help, but in the case of my physical condition, it won't, so I choose

not to expend the energy. If I'm in the mood to complain and my husband gives me

one of his famous " Oh, how bad can it be? " speeches, I usually say something

obnoxious. I also try to admit that I am being particularly whiny, but I embrace

my whining moods. I'm allowed to be in a mood if I want to be. I don't much

think of the effect that

mood has on my family (except my kids - I don't want them to see me being too

down), but I know what that mood does to me, and I like to protect me. I have

this strange fondness for myself, and I don't like to hurt me anymore than I

have to. You need to find a way past this, but just for yourself. If your

parents don't like it, they can leave the room, right? You can't, so you need to

figure out how to cope with the frustration.

Meditation helps with the acceptance. Mindful meditation helps with the pain. 

First of all, sounds corny, but that adage about accepting the things you can't

change, it's got a lot of truth to it. If you can't change it, don't waste your

precious energy trying. You can't undo the damage done to your spine, and all

the misery in the world won't make that different. So you need to put your

efforts into finding ways to let out the anger (and you have every right to be

angry about it!). Internalizing is bad for our health, leads to all sorts of

nasties. Then you should find something external to focus on, something that

lets you forget your own body and its troubles for awhile.  I paint, crochet,

and give out meaningless advice on the internet. I blog. I watch my kids act

like monsters. I find the things I can be thankful for, like the fact that I can

see the colors of paint I love so much, and that I can hug my kids and can

communicate with people. The

small things are what make up life, and finding small things to love and be

happy about is so important.

Seriously, few people have an easy life and I don't think anyone should expect

one.  Life is hard, but I think it's worth the effort. The alternative sure

doesn't look like a lot of fun to me, either.

I hope you can get out of your parents' home and away from them telling you to

suck it up. Please know that's not what I'm saying. I'm trying, and probably not

succeeding, to give you some alternative to feeling bad with no outlet. The bad

feelings are going to happen, but you need to find a way to let them out so they

don't hurt your life more. Just sucking it up, that doesn't help at all when it

comes to frustration.

Many hugs,

 

Check out my blog: http://princessmatildalovestostamp.blogspot.com

Subject: Re: I need help dealing with family and life's frustration

To: tetheredspinalcord

Date: Monday, December 29, 2008, 9:36 PM

I have been talking with a doctor and it seems to help for a couple

of

hours. I've even tried all types of anti-depression meds but they

effect my walking ability in a big negative way. The doctor is just

hoping that in a month when I move back into my apartment, and away

from my parents everything will be better.

But how does everyone else deal with this? Deal with knowing there's

nothing that will heal you? Deal with knowing that slowly your

condition is getting worse? How do you keep fighting to make your life

better?

>

> Oh Hon, I am so sorry your Parents aren't supportive. That would

be awful.

> {{{hugs}}}

>

>

>

> I was wondering if you could be suffering from depression. Have you

talked

> with a doctor about that possibility?

>

>

>

> Anne

>

>

>

> _____

>

> From: tetheredspinalcord@ yahoogroups. com

> [mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of rutherford.kris

> Sent: Monday, December 29, 2008 5:32 PM

> To: tetheredspinalcord@ yahoogroups. com

> Subject: I need help dealing with family and life's frustration

>

>

>

> I'm 25 years old and need help with how to deal with family. I have a

> tethered cord and been thru 4 surgery's. Each time it only took about

> 6 months to recover and be up walking again but this last one has

> taken over 2 years of full time PT. With my new PT program I am

> FINALLY showing faster (Still slow for me) signs of improving but

> still on a walker.

>

> What is difficult is walking up every morning knowing that everything

> I do that day is going to be difficult. And when something no matter

> how small it is goes wrong or is harder I get frustrated and my mood

> changes. And when that happens I snap when my parents tell me to " get

> over it " or " move on, your frustration is making it worse, you are

> making your life harder " Basically my parents no matter how much pain

> I'm in, how little of sleep I got or how hard it is for me to take a

> step, want me to suck it up, move past it and be happy/positive/ smile.

> But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

> day to walk again and I'm at this point " Is it really worth all this

> frustration "

> I'm sorry but if you are not dealing with a TC you have no idea what

> we deal with every day. So how do I get this point across to my

> family? Since they feel they know exactly what I am going thru since

> they have been going thru this with me since I was 13.

>

> I need help because I'm really tired of being in a constant shitty

> mood because I have been told by my parent that its my fault I'm still

> battling recovery due to my frustration. Soon I'm afraid I'm just

> going to give up!

>

>

>

>

>

>

>

>

[Guest guest]

Hi Kris

(, could you post this online if you see it doesn't come up on your

email - usual problem of my messages not getting to people they are aimed

at - thanks!)

I know how you feel - and my pain and frustration got me thrown off my

doctor's list and almost blacklisted at work and got a reputation for being

a moody cow (basically!)

However, my wake up call was that being chucked off my doctor's list, and I

had to find myself a new doctor fast as I had so many other ongoing things

at the time. I took myself in hand, and found a counsellor (at my place of

work actually, but it could have been anywhere). I worked with him for 9

months on my moods, what was driving them, why I was so unhappy (for the

whole of my life - I was 37-38 by then), and together we worked on

strategies for dealing with the bad days, and for controlling my temper and

dealing with the ongoing pain etc. It helped me - it might help you get

through the c**p that your parents are throwing at you.

On that point, perhaps the solution is to have one HUGE, and I mean

HUGE!!!! argument about it. It might make you all feel dreadful, including

making your pain worse for some time, but as long as you choose your works

carefully, you could tell them EXACTLY what it is all like.

My metaphors for my pain were " what about having the worst flu you have

EVER experienced, then add in the worst migraine pain you could imagine,

then add being hit directly and very hard in the operated area of your back

(or someone's weak point) with a very pointed stick, then add in the aching

pain that you feel when you get really cold, but add in the worst type of

fever pain...... and then try to get out of bed and continue with normal

life without making any complaints about pain or discomfort " .

Tell them that " yes, life sucks " but it is no good you (parents) telling me

to " buck up " or " get over it " as it is just not going to happen, at least

not in the short term or while I am dealing with this pain and lack of

ability.

You could also throw back on them a hypothetical scenario - what if you

(parents) were in this position? How would YOU feel if I kept on at you to

stop complaining, and " buck up " ? How would you feel if I (as a child)

dis-respected you, and told you where to go? How would you feel if you

became suddenly completely disabled, or lost abilities, and yet I told you

to " buck up " and get over it. How would they feel if you did that?

On your point of " how do you get over feeling that your condition is

getting worse " . Well to be completely frank, that is your situation, and

there is no way that you will get your pre-operative life back. That is the

truth and everyone who has this TCS has to face this at one point or

another. I was relatively lightly-touched by the effects of my TC prior to

my deterioration, but through the hard way (depression and counselling etc)

I had to face this and recreate a new life. I see my life as pre-July 2001

and post-July 2001. Post 2001 was a new life with chronic pain, and

deteriorating feet etc, BUT I faced this with continuing with exercises,

coping with day to day stuff, acupuncture, getting a new job this year, and

ultimately taking time out from work and going travelling which I didn't do

aged 18. My career break blog is at http://careerbreak-nina.blogspot.com

and I recorded my problems with my TCS as well as all the adventures I had.

Other than travelling (!) I found different things to concentrate on -

keeping fit, working, talking etc with my new partner and ultimately

getting on with life (albeit with TCS).

Unfortunately TCS is the hand we are dealt with. It is entirely fluke that

we got it and not our sisters/brothers/moms/dads. However, TCS is a

relatively rare thing and we are all unique in what type of TCS we

have/had. This group has been invaluable in supporting me, and I direct

others here from my own website

Keep going Kris, it will get better. It takes some people longer than

others, but we get to our own level playing field sometime. Keep writing

in, as people will help you with lots of issues

Best wishes

Nina

Bristol, UK

www.btinternet.com/~tetheredcordresources

--

>

>

>

>

> I might not be much help, because I've been told that I'm way too easy

> going and upbeat. I'm going to try anyway.

>

> Life sucks. How's that for a pep talk?  )

>

> Pain is awful to deal with, and it makes me so tired. But the way I look

> at it is this. I can be mad about being handed a life filled with

> physical difficulties, but what will that get me? It gets me a life

> filled with physical difficulties and then I'm angry on top of it. Why

> would I want to add misery on top of pain? And that has nothing to do

> with me wanting to be positive for those around me. This is 100% selfish.

> I don't want to be miserable if it won't get me anything. I'm all for

> throwing a temper tantrum like the world has never seen if it will help,

> but in the case of my physical condition, it won't, so I choose not to

> expend the energy. If I'm in the mood to complain and my husband gives me

> one of his famous " Oh, how bad can it be? " speeches, I usually say

> something obnoxious. I also try to admit that I am being particularly

> whiny, but I embrace my whining moods. I'm allowed to be in a mood if I

> want to be. I don't much think of the effect that

> mood has on my family (except my kids - I don't want them to see me

> being too down), but I know what that mood does to me, and I like to

> protect me. I have this strange fondness for myself, and I don't like to

> hurt me anymore than I have to. You need to find a way past this, but

> just for yourself. If your parents don't like it, they can leave the

> room, right? You can't, so you need to figure out how to cope with the

> frustration.

>

> Meditation helps with the acceptance. Mindful meditation helps with the

> pain.  First of all, sounds corny, but that adage about accepting the

> things you can't change, it's got a lot of truth to it. If you can't

> change it, don't waste your precious energy trying. You can't undo the

> damage done to your spine, and all the misery in the world won't make

> that different. So you need to put your efforts into finding ways to let

> out the anger (and you have every right to be angry about it!).

> Internalizing is bad for our health, leads to all sorts of nasties. Then

> you should find something external to focus on, something that lets you

> forget your own body and its troubles for awhile.  I paint, crochet, and

> give out meaningless advice on the internet. I blog. I watch my kids act

> like monsters. I find the things I can be thankful for, like the fact

> that I can see the colors of paint I love so much, and that I can hug my

> kids and can communicate with people. The

> small things are what make up life, and finding small things to love and

> be happy about is so important.

>

> Seriously, few people have an easy life and I don't think anyone should

> expect one.  Life is hard, but I think it's worth the effort. The

> alternative sure doesn't look like a lot of fun to me, either.

>

> I hope you can get out of your parents' home and away from them telling

> you to suck it up. Please know that's not what I'm saying. I'm trying,

> and probably not succeeding, to give you some alternative to feeling bad

> with no outlet. The bad feelings are going to happen, but you need to

> find a way to let them out so they don't hurt your life more. Just

> sucking it up, that doesn't help at all when it comes to frustration.

>

> Many hugs,

>

>  

> Check out my blog: http://princessmatildalovestostamp.blogspot.com

>

>

>

> Subject: Re: I need help dealing with family and life's frustration

> To: tetheredspinalcord

> Date: Monday, December 29, 2008, 9:36 PM

>

> I have been talking with a doctor and it seems to help for a couple of

>

> hours. I've even tried all types of anti-depression meds but they

>

> effect my walking ability in a big negative way. The doctor is just

>

> hoping that in a month when I move back into my apartment, and away

>

> from my parents everything will be better.

>

> But how does everyone else deal with this? Deal with knowing there's

>

> nothing that will heal you? Deal with knowing that slowly your

>

> condition is getting worse? How do you keep fighting to make your life

>

> better?

>

>

>

>>

>

>> Oh Hon, I am so sorry your Parents aren't supportive. That would

>

> be awful.

>

>> {{{hugs}}}

>

>>

>

>>

>

>>

>

>> I was wondering if you could be suffering from depression. Have you

>

> talked

>

>> with a doctor about that possibility?

>

>>

>

>>

>

>>

>

>> Anne

>

>>

>

>>

>

>>

>

>> _____

>

>>

>

>> From: tetheredspinalcord@ yahoogroups. com

>

>> [mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of

>> rutherford.kris

>

>> Sent: Monday, December 29, 2008 5:32 PM

>

>> To: tetheredspinalcord@ yahoogroups. com

>

>> Subject: I need help dealing with family and life's frustration

>

>>

>

>>

>

>>

>

>> I'm 25 years old and need help with how to deal with family. I have a

>

>> tethered cord and been thru 4 surgery's. Each time it only took about

>

>> 6 months to recover and be up walking again but this last one has

>

>> taken over 2 years of full time PT. With my new PT program I am

>

>> FINALLY showing faster (Still slow for me) signs of improving but

>

>> still on a walker.

>

>>

>

>> What is difficult is walking up every morning knowing that everything

>

>> I do that day is going to be difficult. And when something no matter

>

>> how small it is goes wrong or is harder I get frustrated and my mood

>

>> changes. And when that happens I snap when my parents tell me to " get

>

>> over it " or " move on, your frustration is making it worse, you are

>

>> making your life harder " Basically my parents no matter how much pain

>

>> I'm in, how little of sleep I got or how hard it is for me to take a

>

>> step, want me to suck it up, move past it and be happy/positive/ smile.

>

>> But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

>

>> day to walk again and I'm at this point " Is it really worth all this

>

>> frustration "

>

>> I'm sorry but if you are not dealing with a TC you have no idea what

>

>> we deal with every day. So how do I get this point across to my

>

>> family? Since they feel they know exactly what I am going thru since

>

>> they have been going thru this with me since I was 13.

>

>>

>

>> I need help because I'm really tired of being in a constant shitty

>

>> mood because I have been told by my parent that its my fault I'm still

>

>> battling recovery due to my frustration. Soon I'm afraid I'm just

>

>> going to give up!

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

[Guest guest]

, I feel your pain and frustration through your words and I can soooo

relate. I wish I had fine words of wisdom but I am so often right where you are

at. I can tell you what you already know.....they will never understand. I can

also tell you that it is very very difficult for a parent or loved one to watch

us suffer. They feel absolutely helpless because they know they cannot " fix "

us..or even find someone who can since we really cant be fixed and there is

usually lots of guilt involved..especially with a congenital defect because they

think they somehow did something to cause it. When we put the " brave " face on,

it makes them think that we are ok.....for a little while. Of course we aren't

but it lets them rest a minute anyway. As for us getting to rest a

minute....free from pain...well, its rare moments. Yes, I understand the whole,

be grateful for what you have, celebrate what you can do, look at the positive,

blah blah blah. I try my best to

do all those things but sometimes you just get tired of pretending. Its

ok.....we are allowed to get tired you know I know personally, I am my own

worst enemy. I overdo, I dont ask for help when I should....then I berate myself

for not being able to do more, not being able to think clearly (med fog), not

being able to work, go for a walk in the woods, ride my horses, hating this body

that I am in etc etc etc etc. It doesn't help. I hate medicine but live on it,

anti-depressants too. I dont know , I'm sure this isn't uplifting for

you, sorry. But...find the things that make you happy and stay in the moment

with them...and when you are having down moments, try to love yourself and cut

your " self " some slack.             Blessings,  

Subject: I need help dealing with family and life's frustration

To: tetheredspinalcord

Date: Monday, December 29, 2008, 11:32 PM

I'm 25 years old and need help with how to deal with family. I have a

tethered cord and been thru 4 surgery's. Each time it only took about

6 months to recover and be up walking again but this last one has

taken over 2 years of full time PT. With my new PT program I am

FINALLY showing faster (Still slow for me) signs of improving but

still on a walker.

What is difficult is walking up every morning knowing that everything

I do that day is going to be difficult. And when something no matter

how small it is goes wrong or is harder I get frustrated and my mood

changes. And when that happens I snap when my parents tell me to " get

over it " or " move on, your frustration is making it worse, you are

making your life harder " Basically my parents no matter how much pain

I'm in, how little of sleep I got or how hard it is for me to take a

step, want me to suck it up, move past it and be happy/positive/ smile.

But I cant, no matter how hard I try. I'm working out 5 to 6 hours a

day to walk again and I'm at this point " Is it really worth all this

frustration "

I'm sorry but if you are not dealing with a TC you have no idea what

we deal with every day. So how do I get this point across to my

family? Since they feel they know exactly what I am going thru since

they have been going thru this with me since I was 13.

I need help because I'm really tired of being in a constant shitty

mood because I have been told by my parent that its my fault I'm still

battling recovery due to my frustration. Soon I'm afraid I'm just

going to give up!