Loosing hope

dave don't loose hope. don't let anyone tell you how you feel. I will call my daughter in the morning and find out what the surg she had on her tailbone she couldn't sit either and it was the miracle cure for her. stupid question but do you have any pets? sometimes when things are really bad my dog suggles and I put my hands in his hair and I feel better god bless and good luck

The more we guard against pain...the worse the pain gets. You HAVE to get yourself moving, doing as much as you can, even when it hurts. The weaker your muscles/body gets, the more you'll hurt and the harder it will be to dig yourself out of the "hole" as I call it.

Even accomplishing the smallest tasks will do wonders for your self esteem and mental well-being. Just doing SOMETHING on a daily basis will give you hope that you *are* capable.

My dog works wonders for getting me up and moving. She's a lab mix and hasn't knocked me over once. Lol. If you want a dog but don't think you can handle a bigger one, look for a small/medium sized breed. :)

When I was bed ridden after my surgery and over a month in the hospital, I couldn't even brush my own hair at first, or roll myself over. But I got so mad at everyone hovering around me and treating me like a baby that I forced myself to do something every day to get stronger.

If I may ask, why are you bed ridden? Because it hurts too much to get out of bed? Or is it a situation where you're literally like paralyzed and can't move your legs sort of situation? I ask because then I can get a better grasp on things to offer more effective advice for your situation.

Could Home Health be arranged to help you become more mobile? PT can be done in your home which prevents a painful car ride.

After my surgeries, my Drs say "move it or lose it". I know it becomes a never-ending cycle. You need to move to help with pain, but pain prevents you from moving.

I'm sorry that you are struggling and I hope you can find a way to get some relief.

I know this goes against what your body is telling you, but the more active, mobile, and able you can get, the less you'll hurt. But in order to get to that point, you're going to have to push through some pretty horrible pain and ignore your first inclination to *stop* because it hurts.

For a normal person who doesn't have pain, pain is an indicator for the body to
"stop! somethings wrong!" but for those of us with chronic issues/chronic pain, we have to get through that stage in order to stay functioning.

I know it sucks really bad....I have Cerebral Palsy...of the spastic variety...which means...among other things a constant *tight* feeling throughout my body, which then turns to muscle spasms of varying intensity, and then depending on how bad the spasming gets, overractive nerves which sometimes get so sensitive, I can't stand to wear a shirt on my back. But what it all equates to is pain. Pretty much all the time. Every day.

It's a constant struggle not to give in to the urge to just lay in bed, move as little as possible, and let the world go on around me.

But the thing about it is, the less I move...the more I give in to that urge...the MORE pain I'm in overall. Sure, moving hurts, doing things hurts...sometimes horrendously. But when compared to the pain of inactivity...

So trust me when I say that you need to get yourself up and going. do leg lifts while laying in bed to help strengthen those muscles. Even if you can only lift it an inch off the bed at first, its better than nothing and you have to start somewhere. If you can only stand for 10 mins at a time, stand for 10 mins at a time every few hours. Then increase it by 30 seconds, etc etc. Baby steps.

You can do it. And you'll feel so much better when you do. Little by little you'll get stronger. Your body will adjust.

Of course, the above is just suggestions. I don't know what your doctors have advised you. So work within whatever guidelines you were given by the physical therapist and other treating physicians.

Post Edited (LexiRae) : 2/12/2015 11:24:17 PM (GMT-7)

Dave612,
I know you have talked about being bedridden for 2 years and your struggle to do even the smallest of things whether it be movements or tasks. May I ask, who takes care of you? Do you have someone to help you in and out of bed, help you ambulate, bath you, cook for you?
The other members have talked about just taking baby steps and doing a little bit at a time......I also personally know how easy it is to say that and how hard it is to do it!
Not only have do I have failed back surgery as well as other issues, I have a disease of the spinal cord in my lower back that affects my nerves. I could write a book about the sensations and nerve pain that this disease causes. Could you imagine feeling like there are insects crawling up and down your body!!!! UGH! Or the sensation of something touching your skin and just about sending you through the roof - maybe the sheet on the bed or you brushed against something. I know how very painful it can be and personally I don't believe in the pain scale for me because it doesn't exist.
Anyway, please don't give up! Yea things are tough right now, but dig deep - you have to move to help your body heal (only within the perimeters of your doctor's given limitations).
Do you have anyone to talk to or do you keep all this frustration in? It matters, I know it does!

Pam

I say it, but I never said it would be easy. I know exactly how *not* easy it is to force yourself to take those baby steps when your body and mind both just want to throw in the towel.

But I also know, having dealt with Cerebral Palsy for the entirety of my life- that in order to have a life worth living...you HAVE to fight. And push yourself. If you only do what's *comfortable* you'll never know how far into recovery you could actually end up.

I've always had brain damage. I will have it for the rest of my life. And all of the physical issues caused by the brain damage will continuously plague me, challenge me, and change me. My physical abilities will always be depended on my willingness to put in the constant effort to avoid the downward spiral.

Sometimes "hope" is nothing more than the teeny spark inside you that says you don't want to slowly wait to die living this way. But in truth...that's all you need.

I tried the nerve medications. They did not mix well with what I've got going on in my brain. So I use oral pain meds, muscle relaxers, heat/ice, a tens unit. PT, etc.

I've been wanting to get one of those inversion tables, I think thats what they're called. The things that cause you to hang upside down and they decompress the spine. I think that might be helpful too.

I have an inversion table. They're great for hanging clothes on! It didn't do anything to help my back.

Post Edited (Dave612) : 2/14/2015 9:44:40 AM (GMT-7)

Dave - I was talking to my sister who just so happens to have had a L4 thru S1 fusion 1 1/2 yrs ago and is too fighting the pain as well as other issues. We talk to each other for comfort, guidance and just plain "someone to talk to that understands". She had a scan done 2 weeks ago to check the hardware and low and behold one of the screws has come undone and turned, this is causing a host of problems for her.
Question, do you have hardware in your back and when was the last time it was scanned? Just a thought.................
I was glad to hear you have a loving wife and children for support, than in itself can make a world of difference in your recovery and in dealing with your chronic pain.
It is so very unfortunate that I read about so many people that are significantly worse off after they have surgery than before. With that being said, you are still in the healing process of your fusion so you don't really have a clear picture of how well you will feel when all is said and done.
I know one thing............. I could not have made it this far if it were not for my husband and soul mate of 35 years. He has been a blessing from above, my angel of mercy and the essence of my spirit to move on and beat this!

Pam