Post by heatherkford on Apr 17, 2019 8:35:17 GMT -8
SCI incomplete C4/C5 25 years ago. When I met my husband he was at his peak recovery (15 yrs) about 3-5 years later I started noticing a decline in physical ability and chronic fatigue. He seems to always be in pain now. Sleeps a lot. I finally talked him into doing and IOE at Craig Hospital. Something he is supposed to do every 5-7 years I recently found out. But he has waited 25. Anyhow my question other than chronic pain is does anyone else have problems with complete fatigue and what helps? He is either sitting texting/sleeping in his lazy boy or curled up in bed these days "resting". Seriously I have never seen anyone sleep so much. I tried to get him to take a B complex vitamin for energy but he wont do it. He is very stubborn.
ideas?
also has an inversion table been useful to anyone to relieve chronic lower back pain? if so what type?
and what have other incomplete experiences as they age or hit their 20 year recovery mark?
For my hypothyroid, I take capsules of kelp as a natural source of iodine. Sluggishness is one one the symptoms of hypothyroid. If he won’t take kelp capsules, try feeding him sushi wrapped in nori (seaweed)? If he has an iodine deficiency, the kelp WILL make him sleepy, but it’s a good, effective sleep. And when he wakes up, he will actually be awake, not in a half-way-there world.
SCI incomplete C4/C5 25 years ago. When I met my husband he was at his peak recovery (15 yrs) about 3-5 years later I started noticing a decline in physical ability and chronic fatigue. He seems to always be in pain now. Sleeps a lot. I finally talked him into doing and IOE at Craig Hospital. Something he is supposed to do every 5-7 years I recently found out. But he has waited 25. Anyhow my question other than chronic pain is does anyone else have problems with complete fatigue and what helps? He is either sitting texting/sleeping in his lazy boy or curled up in bed these days "resting". Seriously I have never seen anyone sleep so much. I tried to get him to take a B complex vitamin for energy but he wont do it. He is very stubborn.
ideas?
also has an inversion table been useful to anyone to relieve chronic lower back pain? if so what type?
and what have other incomplete experiences as they age or hit their 20 year recovery mark?
Hi and welcome Heather. I'm 54 and a C5/6 incomplete for over 20years now. What do you mean by meeting your husband at his peak recovery of 15years? Because peak recovery is usually before 2 years after initial injury......many do keep on getting some more recovery after that mark but it's a lot slower. What recovery did your husband get?
The reason your husband is resting a lot during the day could be because he isnt getting good enough sleep at night. I don't suffer the chronic pain which most sci people do but sleep is and always is harder since my accident. If I dont get a good nights sleep, its so much harder to do more during the day. There are many days I have to have a nap.
As for what incomplete experiences Ive noticed from hitting the 20yr mark.....nothing majorly physically different really. Ive found it harder to keep staying motivated because having this sci never lets up, there's never a break from it as it's always a constant battle. I'm a walker and my balance isnt as good as it was say 10years ago.....I have finally succumbed and bought myself a rollator in the last couple of days because I need to get out more and I know its not good for me to be stuck at home.... I got it because walking is not only difficult, its dangerous for me because I can tend to trip and fall.....I havent been getting out and about because of that reason I actually cried 2days ago when I put the rollator together because I know I need it now.
As for your husband not going back to the hospital every 5 to 7 yrs.....I never go back either, maybe I would if I had a major physical change but I think I'd just get a referral from my GP instead.....the system let me down a lot of years ago.
Do you think your husbands issues are only physical? Could he be depressed?
He does sound depressed. Chronic fatigue is real for some and I hope Craig investigates it. You are in a thankless position- we wives often have our opinions dismissed and there is not much you can do for someone who will not take charge of their own health. Having said that, not doing so is often a sign of depression.
Hi heatherkford, and welcome to the forum. I am wife to Peter who has injuries at a similar level to your husband. Does you husband walk? Peter can walk a little but gets fatigued very quickly. He is still slowly recovering after 7 years. I sympathise with you. It is very hard to hit the right level between encouragement and nagging. As Tetra says, there isn't much you can do for someone who won't take charge of their own health. I sometimes get sick of the sound of my own voice - but unless I intervene Peter will fall back into bad ways of doing as little as he can get away with. Maybe depression is a factor. However, I have noticed that the less Peter does, the less he feels like doing and consequently the less he is able to do. He has always been happy sitting watching sport on TV and is naturally quite lazy (he knows this about himself). He admits that often the effort involved in doing something/getting something for himself seems disproportionate to the benefit of doing it. Without my "encouragement" he would move only when he has to. A factor for Peter is pain. Sitting for long periods means being pain free until he moves - then the pain kicks in because he is stiff. If he moves frequently the stiffness doesn't build as much so moving isn't as painful. His pain is caused mainly by spasticity and tight muscles these days and the physios pointed out to him that having your muscles "turned on" all the time is physically and mentally tiring. The physios tell him to move little and often - ideally he should get up every 20 mins minimum. We have a white board in the hallway and he marks off every time he does a straightening exercise against the wall or walks the length of the hallway. He sets himself a target for each day and his competitiveness means he will do his best to reach the goal. I know this sounds very childish, but he finds it helps him and also he can point me in the direction of the whiteboard when I suggest he hasn't been moving much The other strategy that helps us is selective deafness on my part when he shouts that he needs something fetching or doing - he either lets it go or comes to find me. Of course this is all irrelevant if your husband cannot walk! But the point I am making is that it is a downward spiral - whether you have a disability or not, the less you move, the less you are able to move. Does he have hobbies or things that stimulate him in some way? Could you build something around them? If you are not stimulated then it is easy to sleep the day away. Peter is a good sleeper too and often nods off in the afternoon if there is nothing to distract him. I am jealous as I am not a daytime sleeper no matter how tired I am. I guess what I am saying in a very long winded way is that lack of movement and stimulation often leads to fatigue even when depression isn't present. What to do about it is an individual thing. Peter used to be a keen gardener and we have managed to find ways he can still potter around and do some pruning etc. He enjoys this and it gets him in the fresh air (though as we are in the UK it is very weather dependent!). Re lower back pain - again depends on ability - but Peter has had some good results from laying on his bed and with my help tucking his knees into his chest and rocking side to side - this stretches and massages the lower back muscles. He does this every morning when he does his daily stretching exercises. He also has a MotoMed bike (motor assisted) that he uses every morning. Whether it is depression or lack or exercise getting him moving again will help beat the fatigue. I wish you luck - being supportive is a hard job sometimes.
I agree with MOco that old habits will always tend to continue. My guy never liked to exercise and was devoted to movies and then the internet. Since he had a stroke 4 years ago that habit shows it's deadlines. He gained a lot of weight and has lost a lot of muscle. He plain refuses to do any exercise, while I am doing my pathetic little laps around the house, faithfully every day because for me exercise is a lifelong joy as well as habit.
I have the same problem as Peter in that the only time I'm pain free is when I lay down. But that is no fun.