Is it really that bad?

[jittery girl]

I know how bad everyone who posted here suffers. I have the same panic reaction when I feel it coming on and knowing the next five hours are going to be misery. I just wanted to thank everyone who shared, I thought I was alone. It is a horrible feeling being the only one awake and feeling like you are going crazy. My husband sits up with me for as long as he can. He props himself up in a chair in the living room, trying to stay awake and reassuring me that it is "Only a few more hours, I can tell you are on the downhill side." I sometimes wish he would go to sleep so I don't feel guilty about him staying up.

[Polar Bear]

I agree, in that it can add to the misery when 'your discomfort' is affecting someone else.
Sometimes I just want to be left alone in my misery to get on with it because ''' this too will pass''

[Chipmunk]

I know how bad everyone who posted here suffers. I have the same panic reaction when I feel it coming on and knowing the next five hours are going to be misery. I just wanted to thank everyone who shared, I thought I was alone. It is a horrible feeling being the only one awake and feeling like you are going crazy. My husband sits up with me for as long as he can. He props himself up in a chair in the living room, trying to stay awake and reassuring me that it is "Only a few more hours, I can tell you are on the downhill side." I sometimes wish he would go to sleep so I don't feel guilty about him staying up.

Oh, that's so sweet. <3
It reminds me of being in labor and how sweet one's partner can be when you are riding the rollercoaster of suffering.

[badnights]

@dogeyed and rthom
do you do physio for your backs too? all those tense muscles, GG..

[rthom]

I have done physio previously and found that it is a bit counter-productive--by the time i get it done i was woorse off than when i arrived--which would be acceptable if it improved over time but it did not. I found that water therapy helped more but do not have access to it now. I currently do a series of exercises at home but would be better off if i could add to that a hot tub and one of those upside down stretching tables to take the pressure off of my spine. I get inflamation (the size of golf balls) against it and loose the use of my legs and other functions. So far my shots help for a couple of hours (10/ every 10 days) and every 3 months i get steroid shots--those seem to be helping long term--I'm very excited about it. My shots have hurt like the dickens 2 times in a row now--this may sound bad but from my standpoint it's a miracle, (and just a bit annoying lol). The last 5-6 days my back has been far worse and my legs hard to get to function properly--it's upsetting but i have faith that it will improve again soon. It's been over 10 years since i lost the use of my legs and this change and freedom i got from the recent improvement is really exciting for me. I could walk almost normally for a few days--so exciting! Sorry for blathering on i'm just so excited about it--(can u tell?), so i'll finish before i start on about it again--thanks for the question. It's nice to have something good to report.
Randy

[Polar Bear]

Randy, your excitement is infectious. Good Luck

[jy13131]

Randy, your excitement is infectious. Good Luck

[badnights]

Wow, that's awesome Randy! Funny how a bit of good news in an ocean of pain can make the ocean shrink!

Is there a swimming pool near you? Do you not have access to water therapy because you don't have access to a pool, or to a therapist?

[Chipmunk]

That's very exciting!

[rthom]

I don't have access to a heated pool that is affordable. Had it been a few years ago i could have had wsib install a heated exercise pool, but did not own our house--(lost it after the accident), so they would not help and now they don't have to. When i did it before it was in the hospital physio department.--limited resources there as you can imagine.

[badnights]

That all sounds a bit like a horror story. What accident? (If you want to tell)

[rthom]

During a snowstorm I had a workplace accident with a skid of soil that slid down a snow covered ramp--i was twisted at the waist when the other person released the load (you kind of had to be there for it to make sense) and it tore my ligaments and muscles along my spine herniated the disks and ended up in surgery. I awoke to the surgeon yelling at me repeatedly to move my toes, legs. It wasn't to be. Scared the heck out of me. I'll never forget that moment, the realization of the powerlessness of my situation. I just took it for granted that everything would be OK--the dr's could fix things. I had not thought it could get worse than it was before i went into surgery. The kicker to the whole thing was that i was in that situation because i had decided to go back to college so that i could work smart not hard. Had I have stayed in my previous job (construction) I would likely have been OK. At least there i had more control over what i did or did not do. I needed to move and take on pt work while in school and that is where i got hurt. I was going to school for environmental engineering had managed to get into one of the most prestigious courses in the country for it. It was very hard to give up. It was a real rollercoaster ride for me because only a year before that i had gottent he use of my left arm back from a car accident that caused the seatbelt to tear my breachioplexus and that was not suppose to get any more than 35% recovey of function back--I got about 90-95% but it took 2 years of fussing with it. On my part the patience and not doing was hard--as i was holding back my recovery by using the other arm too much. It was keeping the injured one non-functional at all. I couldn't feel anything or control it at all. Funny story was I was walking home with my son one day when someone smacked me up the back of the head--I looked at my son like why'd u do that? He had no idea what i was talking about--it was me that had done and and did not know it. I was so frustrated from it swinging and smacking on my leg (made my leg sore ) that i grabbed my hand and "threw it down". What i didn't know was that it came right up behind me and hit me in the back of the head--lololol. I can't even fathom that it could reach like that but lack of nerves working keeps us from being protective of our limbs. don't now if it makes sense the description but it was funny--and sad of course. But from my point of view funny as all get out--feel free to laugh yourselves silly about it. lol. It would have been a riot to have on video--i'm sure my expression would have been priceless.

[Polar Bear]

Yes, sort of funny.... in a funny sort of way.

[badnights]

wow. So you recovered your arm from severe lack of functioning, and then you recovered the ability to walk, which was in question before the surgery? or, I guess, you were paralyzed before the surgery?

the next obvious question would be 'did you have WED before that' but you've had it since a baby, haven;t you.

That is definitely both funny and horrifying, about the arm

[rthom]

I actually could walk before my surgery but was much worse off after. The surgery was for stability and to get rid of the floating disc material and to help with bad pain in the legs.
Yes and about 2-3 years before the arm being lost and surgery on it I had to have a lung removed--I was dying, I recovered great from that and then great from the arm--but my luck seemed to stop with the back.
And yes I had the rls all my life--couldn't miss it and even if i could anyone i knew couldn't! lol