11 replies to this topic

[Chel]

I know when each live pretty difficult lives and I try hard not to focus on myself and try to keep my mind occupied with something else, but at the moment I hope it's ok that I talk for a moment. I try to be brave and manage what I'm going through because I can only imagine some of you are going through much worse. What hurts me so bad is when one knows that someone do not what to deal with what I am going through. The only time I go out of the house is when I have a doctor's appointment or treatment and then it's such as hassel I hate to go. The pain itself is overwhelming and day or night I cannot rest sometimes I may get a few minutes here or there, but The other day I had to go back to the ER; the only thing they can really do for me is give me some fluids and pain meds and to be honest that is the only time I get some sleep. It seems that my life is destined to be painful with no relief in site, I know I am not alone and believe I'm not being insensitive because I know it can't be easy - but I just need to cope. I feel so down right now and just wondering where does one go from here?

[Ratticis]

Forward.

[pinkcloud]

Hi chel

you have every right to feel fed up - even when others are in whats medically classed a worst situation. You at this moment in time are experiencing the worst pain you have ever felt in your life. Thats no different to those with less 'whats medically classed' as less or worse conditions than yourself. Pain is considered the worst type of punishment in life (old days it was public flogging, but it could be fear of pain of a headache, period pains,burning oneself on a cooker childbirth, falling over,hell, emotional pain of loosing a loved one etc) thats why even in a recession the drug stores are doing ok. And why we go to extraordinary lengths to avoid pain in the first place and take tablets or other forms of natural ways to ease pain. A lot of the time we can say 'oh what did i do to deserve this?' Blaming ourself in some way. Definatley not, sci is enough to deal with, feeling bad about feeling its not ok to be sad and want to find out how to enjoy a new life, is not what you need on top of this me flower.

Read me post in the 'new sci section' - called 'what doctors ought to put on pre-operation forms.

Are you able to still have fun in home? Are you comfortable lying down? Do you like audio books while doing puzzles? watch films, chat on the phone?....I learnt to enjoy life again after a work and fun filled free life. Do you like massage? I book meself into a salon on half price day and have this.

Remember the best time to get sci is now. Hardly anyone can afford to go out and now stay in. I bet your life wasnt about you being able to walk. Its about being you being you. Try and remember if you can, what - on the days at work when you really didnt want to go in but had to,because you were ill - what did you dream of doing? reading, chocolate...

Chel the stage we are at this early in life comes to almost everybody about the age of 65. When we retire. And then we realise we have worked our bodies so hard we cant do any of these as we are too exhaustted, ill etc. You have just reached retirement early. Our body parts never come with a guarantee of how long they will last us - its the luck of the draw.

Life can be just as good as it was before, just good in a different way. Living with the pains too....well us on here will help you with this as much as we can

Until then remember you deserve as much help as anyone else - you didnt murder anyone, you didnt rob an old lady in the street, you got sci. And you dont deserve to be punished or apologise to anyone why your hurt, others like you - hear the word 'i hurt' and thats all we are interested in helpng you with. Some may not yet this is about them, not you.

pm me anytime, i'll never tire of hearing you on sad days or good days. Friendship isnt about cherrypicking only parts of a person, its about accepting them as a whole. Chat soon :-)

[Chel]

Thanks Ratticis; that's what I am trying to do move forward, but I found out that the more I hold my thoughts the more depressed I become, but anyway ty, so much.

Pinkcloud, thank you ever so much for putting things in perspective for me; I try to keep my mind occupiedsince I'm used to doing something, but you know sometimes there are days where you cannot move due to the pain be overwhelming. I find it hard to eat or anything else, but I try to respond to post, write poems or just surf; I also ike puzzles, but most of the time the pain over takes me. My PM doctor has talked to me about Hospice, he said that may have to be my next step due to the SCI and MS, but I must admit I am a little scared about that, but I know something must be done about the pain.. Again thanks so much for allowing me just to get it out in the open!

[Ratticis]

By all means don't hold it in. Yell, scream, swear, cry, whatever it takes. Sopmetimes you just need to let it all out. I had to fight like hell to get pain meds. Kept getting this "That's impossible, you can't feel anything, you're paralysed, BS from a bunch of moron "experts" (who in all actuality weren't even half done their training and had no clue about SCI). Then my docotr here wouldn't renew my perscription because "you seem fine to me". Moron. Some days are better than others, duh! They all treated me like I was just trying to get doped up. Now i'm to the point where I almost never need pain killers, but some days I can barely move w/o them. I try to avoid them for as long as I can, but I would rather have and not need then need and not have. Hope things get better soon. Try listening to music or watching movies ot anything to get your mind off the pain. Or come on here for a dose of insanity or to complain to people who know what you're going through. There's always someone around willing to listen.
Good luck!
El Ratto

[goose]

hi Chel

i don't remember when your sci occured. i'm wondering if you could go to Shepherd spinal center in atlanta for an evaluation. they have some great doctors and know alot about sci. sometimes there me something causing the pain that a reg. doctor just doesn't see. local doctors are okay for regular problems but i haven't found many who are good with sci problems. dr. apple has been there a long time. i would at least give them a call. they won't 'treat' over the phone and sometimes you have to go to someone higher. keep trying untill you find the right person. be a loud mouth.

[Tetracyclone]

The only solace in this deep end of the pool is you have all of us to party with.

[Chel]

Thanks so much you all; I am trying now to get better treatment because here in Alabama things are different; they don't know a whole lot. So putting my all forward!

Thanks!

[wheeliebear75]

Keep things in too long & the pressure will just keep building up til it EXPLODES!

When I'm stuck in bed (pins & needles sensation on backs of thighs & buttocks makes it painful to SIT) I love listening to my MP3, use a laptop to watch movies on NetFlix, play games, IM with friends, and I've got some paper & coloring books & crayons & colored pencils to draw (I like coloring/drawing.....never said I was GOOD at it). And although my mom & B/F are there for me it also helps a LOT that my cat Oreo & Siberian Husky are around...it's harder to cry when a sweet looking blue-eyed Siberian licking my face & my cat tends to be VERY snuggley especially when I'm feeling crappy.

I think that if you had more things to keep your mind busy maybe this would help?

There is also meditation though you have to practice practice practice at it until you're GOOD AT IT under no/little pain before you'd notice it helping with the BAD pain. I use the song by Enya Boadicea (you'll find in on "Enya" AND "Best Of" by ENYA) & use it to take myself on a mountain walk; the more details I add into it the more concentration & areas of the brain. You can actually lower your blood-pressure & heart rate. A good deep meditation will actually cause physiological changes within the body;by concentrating on the breathing (deep cleansing breaths NOT quick ones....that's hyperventilating) you'll increase the oxygen in the blood which can improve the blood-flow to your muscles thereby helping them to hurt less, keeping relaxed can keep the blood pressure from adding to the pain cycle (when we're in pain our blood pressure often raises), & the mental walks will give your brain something to concentrate on besides the pain.

PAIN: Normally this is "a good thing" in that it's that signal that says "STOP" so that you take your hand OFF the hot pan, so you don't try putting all your weight on a sprained ankle, so you'll pull the sliver out. Trouble is when you can't do anything to stop/correct the source of OUCH....this is where the trouble stems from.

I haven't found a group of more understanding folks than HERE! Come back ANY TIME you're feeling frustrated & upset.....there's always a shoulder & some much needed kind words.

Keep things in too long & the pressure will just keep building up til it EXPLODES!

When I'm stuck in bed (pins & needles sensation on backs of thighs & buttocks makes it painful to SIT) I love listening to my MP3, use a laptop to watch movies on NetFlix, play games, IM with friends, and I've got some paper & coloring books & crayons & colored pencils to draw (I like coloring/drawing.....never said I was GOOD at it). And although my mom & B/F are there for me it also helps a LOT that my cat Oreo & Siberian Husky are around...it's harder to cry when a sweet looking blue-eyed Siberian licking my face & my cat tends to be VERY snuggley especially when I'm feeling crappy.

I think that if you had more things to keep your mind busy maybe this would help?

There is also meditation though you have to practice practice practice at it until you're GOOD AT IT under no/little pain before you'd notice it helping with the BAD pain. I use the song by Enya Boadicea (you'll find in on "Enya" AND "Best Of" by ENYA) & use it to take myself on a mountain walk; the more details I add into it the more concentration & areas of the brain. You can actually lower your blood-pressure & heart rate. A good deep meditation will actually cause physiological changes within the body;by concentrating on the breathing (deep cleansing breaths NOT quick ones....that's hyperventilating) you'll increase the oxygen in the blood which can improve the blood-flow to your muscles thereby helping them to hurt less, keeping relaxed can keep the blood pressure from adding to the pain cycle (when we're in pain our blood pressure often raises), & the mental walks will give your brain something to concentrate on besides the pain.

PAIN: Normally this is "a good thing" in that it's that signal that says "STOP" so that you take your hand OFF the hot pan, so you don't try putting all your weight on a sprained ankle, so you'll pull the sliver out. Trouble is when you can't do anything to stop/correct the source of OUCH....this is where the trouble stems from.

I haven't found a group of more understanding folks than HERE! Come back ANY TIME you're feeling frustrated & upset.....there's always a shoulder & some much needed kind words.

Tetracyclone, on 09 May 2011 - 01:40 AM, said:

The only solace in this deep end of the pool is you have all of us to party with.

WELL SAID!

Edited by wheeliebear75, 09 May 2011 - 01:48 AM.

[Chel]

Thank you Wheeliebear,

I am going to try some of the suggested coping skills and do my best to hang on. I think a lack of rest makes me feel further down in the dumps.

Thank you all for allowing me to talk things out a bit...

Sincerely,
Chel

Edited by Chel, 09 May 2011 - 03:58 PM.

[pinkcloud]

Chel

you say thank you for alllowing you to share your sad thoughts...and I say we are the lucky ones, thank you for trusting us with your most private feelings

I recently heard about people with sci being welcome to stay in a hospice, i used to beleve these were only avalable for those whom were dying.

This may sound morbid yet i mean it not too.

Hospices are made up off caring, kind staff who are real used to people in extreme pain, their speciality being making others comfortable as can be. With medication or coping mechanisms.

In hospital i was put on a ward with brain tumour/damage people. They had this calm about them, an acceptence they were soon to pass away from this world. They had no fear, just relief as they knew soon the would be free of the world and pain.I, being in as much pain (so the doctors said) as them also had to sign a will. No medication could ease me pain and even general anaesthetic had problems.

Its here I really learnt how to manage pain, remain being positive, enjoying the fine things in life like a hug off a loved one. We could talk about our conditions in a 'well this is normal life for us now' kind of way without having to try and hide the pain/worries. There were a few nice staff, the majority though i wouldnt let them look after a dying ant, but this was an nhs hospital afterall.

I feel the chance to be around others like yourself will be of great benefit and comfort. And a break from the outside world for a little while.

I play audio cds or radio plays when i am in agony, easy to listen to stories. It keeps your mind occupied and for them bits you miss when a pain attack takes your breath away, pree rewind. It keeps your mind just a little active - enough to distract you.

Edited by pinkcloud, 09 May 2011 - 10:42 PM.

[Chel]

Thank you pink cloud you are too kind I feel the same way, but am a little scared of the unknown; they would be coming in my home, a nurse, minister and a carer they suppose to come and talk to me some time this week and check my qualification. They said when I needed a shot a nurse would come out and give it to me. My hubbiehelps me as much as he can, but he had 2 strokes that left him with some problem, but through it all we try to be available for each other and Love make me hold on to life even when I feel like giving up sometimes. Again, I can't thank you all enough!