CALS Self Care

[Nuts]

I'm reading a lot of posts about CALS being in pain and having back injuries, and I'm sure the list of complaints would be longer if we were all honest. Maybe a thread on what we do for ourselves is in order. What keeps you sane? What makes you feel better? How do you care for yourself?

I've forgiven myself for the weight gain (it can come off later), but I've learned that I MUST exercise or I feel terrible. I walk the dog when I have someone here with hubby. On the days I can't walk, I chase her around the back yard. I'm also trying to squeeze other real exercise in a few minutes at a time, just to keep my body moving.

OK, whose next? I've seen some good tips lately--let's get them into one place!

 

[Dave Kerwood]

Reading (Internet) - Watching Movies (all types) and of course my life saver, my bottle of red wine after Julie has gone to bed works for me.

 

[gooseberry]

Trying to but not succeeding. I am wearing a step tracker to try to get in the 10,000 recommended steps but it is hard. I was walking at work but a new boss has made it impossible.

I have applied for in home care for steve but there is a waiting list. After all the family leaves on new years, I will be sending the VA a letter. We have a waiting list for in home care of 2-3 months due to budget issues.

 

[Nuts]

Trying to but not succeeding.

I have applied for in home care for steve but there is a waiting list. After all the family leaves on new years, I will be sending the VA a letter. We have a waiting list for in home care of 2-3 months due to budget issues.

This is one thing about the VA that is very difficult for me to accept. Each hospital is seperate..budgeting and care choices are independent of each other. If one has funds for home care for PALS, so should another. Argh!

 

[gooseberry]

If, after the first of the year, it isn't in place I am contacting va secretary. Va social worker said there was a long list waiting and they didnt have the money. I would think if you qualified for it then you really need it.

 

[djbailey]

I have continued my work out by moving 110lb, 5 or 6 times a day. In stead of "sit ups" I have adapted to "get ups and get or do". My "fit-bit" shows that I have anywhere from 9,000 to 13,000 steps a day. If I could stop the constant snacking all day I would quickly go back down to 170 lbs. (-7lb). I still walk the dogs twice a day. All to soon, I will be alone with more time to get body and mind back in shape.

 

[sunnysierra]

I am at the begging of the ALS journey so have not been hit hard by the time crunch like the rest of you. I had surgery to repair my achilles tendon, to remove a bone spur and to transfer a tendon to strengthen the achilles so I have not been able to exercise in months. Only now am I "allowed" to do 5 minutes on a stationary bike. I know how much better I'd be dealing with life if only I could get in a moderate to vigorous workout every day. Soon though..... I have an elliptical and a stationary bike in the living room. Not particularly attractive but very convenient. I am hoping as time goes on and we need to add equipment to our house that I will still have room for at least the elliptical. I also have a passion for horses and riding. I come back from a ride as a transformed, glowing person. Riding time will be limited down the road. I know this, but I cling to the hope I will still find some time for riding. Other self-care practices: meditation, yoga and tai chi dvd's (as soon as I get the okay from ortho doc), morning cup of tea along with my gratitude journal. I look forward to reading about the other CALS suggestions. I need all the help I can get! I think I will get a step tracker as I am able to move more. Sounds like a great incentive!

 

[Atsugi]

Sleep, diet and exercise are important to CALS.

But when I think back to my time as a CALS, I mostly ate Hershey bars and washed them down with 5-Hour-Energy drinks.

 

[Nuts]

Chocolate and wine, yummmm. The snacking is killing me. I'm a stress eater, and while I can lose the weight later, I'll soon not fit into any of my cloths.

 

[affected]

Pilates - Keep that core strength and you can do short times working at it - even 5 - 10 minutes of some pilates will make a huge difference.

Stretches - if you train yourself you can do good stretches while doing other things. Put the kettle on to boil and do a few good shoulder and arm stretches while you wait. It's amazing how many little opportunities there are in the day to stretch. I found I had to sit so still a lot doing personal care like peg feeds that I felt very tired from doing things at such a slow pace. So again, boil the kettle and you can do a gentle walk or jog on the spot to get the blood moving again.

When we started getting home help for 1.5 hours in the evening I would make my dinner and eat it somewhere separate. Eating well became difficult for me as Chris could only eat puree and he craved texture. So I felt so guilty making a 'nice' meal and eating in front of him.
Then I would garden or walk around looking at the gardens.
When morning care staff were here I was madly trying to cram in as much of my money-making work as I could, as when they left Chris would be demanding so much from me as he would put off them doing as much as he could get away with, then need me. But they would have done lots of housework, washing etc so they were a huge help.

Lastly - taking a break for a cuppa somewhere on my own. This became important for me as Chris was so withdrawn and so often angry. So I would spend hours completing his care with him refusing to even make eye contact. To just go to a garden area on my own for 10 minutes to drink a cuppa and be quiet was important for my spirit.

 

[SLAUGHTER1555]

Lol these post made me laugh so hard thanks. Tillie what you said sounds so wonderful but first I need to lose about 50 lbs smh. I am so glad to know that snacking, gaining weight and more snacking is a Cals kinda thing. When I'm sad I eat too so sad and I try to stretch if I can remember to stretch between being tired and sore life would be grand. And we got rid of our dog cuz I couldn't walk him. All in all this post was encouraging

 

[SLAUGHTER1555]

And is there a "Like Button" on the forum cuz because I sure would have like to hit that button on some of this post lol

 

[affected]

no 'like' button but you can rate the thread with stars at the top right

 

[SLAUGHTER1555]

Thanks Tillie I'll look for that

 

[maryhahnward]

He goes so fast in his power chair I have to run to catch up with me; that's my exercise

I have a treadmill in the house. I steal some time to get some walking done on it. I use to be a runner but my bones are misbehaving with arthritis. I also have a jar of little chocolate bars in my home office. It's my go to when I need a pick me up.