muscle building continues, firsts today, able to clench my left hand into a fist, it takes a few seconds but going in right direction. also the pedal exerciser is a workout and strengthening me, just have to keep it slow cause i over did it and shut me down for three days last week.
Over doing it, get's me in trouble all the time. After a long week of set backs, you wake up and feel fine. Then you start "feeling your oats" and do too much. However I am sure that I can do more than last year at this time. Glad you're seeing improvement Sam.
improvement is continuing, my dad died a couple weeks back at 86, miss him very much, so i've been down and not posting much. also so tired of feeling crappy at times and the slowness of this permanent recovery ive been on now for 4 yrs. I guess im venting because of the solitude, sadness and the hell of this perm recovery I have to do for the next 20 to 30 yrs. doesn't seem to be worth it at times, but thank goodness for the minor improvements and cannabis and my kids that keep me going. keep pushing.
Yes, sam, you have some things “going for you” that others of us don’t. For me, standing up (even for a few minutes and with braces) would be something I would dream about afterwards.
Since we all are in recovery in some form here, got a question and interested in all responses. Currently I am post injury 1 year and 11 months and gaining strength fairly rapidly now, I am standing for 2 to 5 minutes in one place many instances during the day up to 10x and walk in my walker a couple times a day for about 30 ft each try. this has been happening for about a week now and I am super sore in many places and muscle twitches happen regularly and substantial twitches at that. how long does this go on? I am in serious muscle soreness and hoping this doesn't last to long? My goal is to be walking again one day, at least some of the time.
Even I can not figure out how to create a new post --- I'm trying to get my Dad in and it is user friend less.
improvement is continuing, my dad died a couple weeks back at 86, miss him very much, so i've been down and not posting much. also so tired of feeling crappy at times and the slowness of this permanent recovery ive been on now for 4 yrs. I guess im venting because of the solitude, sadness and the hell of this perm recovery I have to do for the next 20 to 30 yrs. doesn't seem to be worth it at times, but thank goodness for the minor improvements and cannabis and my kids that keep me going. keep pushing.
I think my husband Peter would understand exactly what you are saying about being in "permanent recovery". He has been getting better then slipping back a little for 7 years now and he gets down about it sometimes. All his gains are small ones but he has to work hard for them. His physio tells him he should be grateful that he is going forward and not slipping back as at 70 his body will not just "stand still" and stay the same whether fully abled or not. He knows this but just some days he wonders whether the permanent struggle is worthwhile. You work so hard Sam - your dedication is amazing but it's not surprising that when life deals out another blow like your Dad dying you you have a wobble . We wish you so much luck and hope that you feel happier and recover your optimism soon.
improvement is continuing, my dad died a couple weeks back at 86, miss him very much, so i've been down and not posting much. also so tired of feeling crappy at times and the slowness of this permanent recovery ive been on now for 4 yrs. I guess im venting because of the solitude, sadness and the hell of this perm recovery I have to do for the next 20 to 30 yrs. doesn't seem to be worth it at times, but thank goodness for the minor improvements and cannabis and my kids that keep me going. keep pushing.
I think my husband Peter would understand exactly what you are saying about being in "permanent recovery". He has been getting better then slipping back a little for 7 years now and he gets down about it sometimes. All his gains are small ones but he has to work hard for them. His physio tells him he should be grateful that he is going forward and not slipping back as at 70 his body will not just "stand still" and stay the same whether fully abled or not. He knows this but just some days he wonders whether the permanent struggle is worthwhile. You work so hard Sam - your dedication is amazing but it's not surprising that when life deals out another blow like your Dad dying you you have a wobble . We wish you so much luck and hope that you feel happier and recover your optimism soon.
how does peter deal with pain and discomfort on a daily basis, the reason I ask is if I didn't have cannabis I don't believe I would be able to handle for this long?
His pain and discomfort levels vary a lot sam,. Peter gets PIP which is a UK allowance for people with profound disability to help with associated costs - this mostly covers a couple of therapy sessions so he is lucky enough to get a physio and a hydro session most weeks. This is probably his best help with the pain associated with the stiffness from an incomplete cervical injury. He has a series of exercises which he does every day too and this also helps a lot. Currently he's getting hip pain associated with his arthritic hip (aggravated by his uneven gait) and is working hard on building up the muscles that support his hip - slow work but is helping. He also takes 40 mg of baclofen daily which helps (he lowers this when he can but finding getting lower than 40 hard!) He gets nerve pain too so takes pregabalin which he would prefer not to but has decided that for him it is a necessary evil. The only other thing that often works for him sometimes is microwave pads in the winter or ice packs in the summer. To summarise - stretching and medication mostly. Nothing unusual or clever I know. He isn't pain free but it is manageable mostly. We are always on the look out for new ideas to help him and this is one of the reasons I joined the forum. Peter isn't a big fan of online stuff - partly because he gets frustrated by poor hand co ordination which makes him very slow when typing. Partly because he just hates it (he declared email a work of the devil back when it started). So I pass on anything relevant to him.
Sorry not to be more helpful. We are continually experimenting with new ideas we read about - and some help in a small way and some really don't.
wow, I bet the hydro therapy does wonders for him, would love to try that. my pain is mostly a mixture of tight or stiff muscles, weakness in certain muscles, soreness from pt and muscle building exercises, muscle spasms at times, tired from not getting enough sleep. when all these hit at once I then get nauseous. so just a bundle of joy I experience almost daily. thank god for cannabis.
And for me, sam, I look forward to the three hours of reduced pain that kratom gives. That’s when I find out how most people get to feel as just a normal part of their day.
wow, I bet the hydro therapy does wonders for him, would love to try that. my pain is mostly a mixture of tight or stiff muscles, weakness in certain muscles, soreness from pt and muscle building exercises, muscle spasms at times, tired from not getting enough sleep. when all these hit at once I then get nauseous. so just a bundle of joy I experience almost daily. thank god for cannabis.
sam, Sounds very similar to Peter's pain. What keeps you awake? Is it nerve pain or discomfort from stiffness/muscle pain (different sort of pain). If the latter might be worth spending some time experimenting with different sleeping positions. Peter is lucky enough to sleep reasonably well which helps and I know from personal experience how much easier life's crap is to cope with if you get a decent night's sleep. But he can only sleep comfortably propped into position with pillows under his knees and head slightly elevated (wedge under mattress) so he isn't stretched out completely (he can do completely flat lying for short periods in the day). If you don't already it might be worth trying pillows under knees. He also has a very low pillow under his right shoulder to support it as he has some ligament problems in that shoulder. Worth experimenting to see if some pillows strategically placed would help.
He also has a night splint to keep his fingers flat - if he doesn't use it his hands get uncomfortably tight in the night.
The hydro does help but if you have access to a pool that you can get in and out of it is so worthwhile just to be in the water. Peter says that just the warmth and support from the pool help loads with the stiffness. He can also manage so much more movement in the water.
I really hope you can find something to help you with the pain Sam. I know many people on the forum are against medication (because of side effects) and I agree that less is better - but in my opinion (and Peter's) it is better to take the pills than live with continuous pain. It's a risk assessment really. Cannabis isn't legal here but we managed to get some through my kids as it's very easy to get some in big cities (!!!) . It wasn't as helpful for Peter as we had hoped. It was a liquid to vape - so maybe a different strain or stronger etc etc would have helped him - but as it's illegal we can't experiment. Glad you get some relief from it.
its so weird because I have no idea why I wake every morning at 4am, since I go to bed at 10pm I always get at least 5 hrs but it still isn't enough. easy to fall asleep, just difficult to sleep past 4 am and stay asleep. ive never been a bunch of pillows type of guy, but ill try it.
feeling much stronger over the last week, knees are strong, I walk and stand with knees bent, with walker. I did a little too much yesterday excercising and I woke up after sleeping and I was really sore and achey and really nauseous. so now I know if I over do it ill be nauseous the next morning. does this happen to anyone else?