Living With Limitations

choosing life

Just curious how some have handled living with disabilities. What do you do when you can no longer do what you want? How do you learn to focus on the things you have left and not what you must leave behind?

Any advice appreciated.

MsMcDucket

Just curious how some have handled living with disabilities. What do you do when you can no longer do what you want? How do you learn to focus on the things you have left and not what you must leave behind?

It's a gradual process. You grieve for the loss and then you accept it; and then you adapt. I'm in that process of being in a funk and not caring about my looks or anything. Sometimes, I feel guilty because my husband's handicap is much worse than mine.

http://www.youtube.com/watch?v=fiRiWhbw4_c

http://www.youtube.com/watch?v=Vksd1NHE3pQ (This one is graphic but the end of the story is cute.)

Lady Lee

choosing life - the name is a great philosophy for life

My problem has been slowly deteriorating for the last 5 years. I ignored it for 10 years before I ever talked to a doctor about it. But finally got to the point where walking through a grocery store was impossible and brought me to tears.

Five years ago I started using a cane but finally gave in and got a manual wheelchair. I kept it in the van and only used it whe4n going out where I would have to walk distances.

When I moved to Ottawa I became dependant on the wheelchair. I now have a power chair. I still use it only to go out. In my apartment I walk. If I have to be on my feet for more than 10 minutes I use a high stool in the kitchen to sit on while I cook or wash up.

Pain has been the biggest problem - finding the right medication has been the biggest challenge but I think we finally found one that works reasonably well.

So that's the background. Now my perspective.

Life is full of challenges. I see tham as opportunities to learn, grow and discover. Myh physical limitaions are an opportunity just like any other.

People in my building as amazed to watch me off on another adventure. The other day it was going out in the snow to the store - sometimes you just have to get there.

In the summer I am out on the bike paths with my camera stopping to watch the birds and the scenery. I've gone out early in the morning to watch the fog lift off the water - an awesome sight.

In the winter I'll get on the bus (we have buses that "kneel" and open a ramp for me to get on the bus and a parking spot to keep me out of the way lol) and wander around the city planning my next no snow adventure.

During this bad winter of heavy snows I don't get out as much as I would like. So I spend my time on the computer doing a bit of work and play far too many games.

The wheelchair gives the the freedom I need get out in the world.

The pain has been the biggest limitation. When it gets too bad I stop and rest. Sometimes I just have to get my act together and do what needs to be done.

I have allowed some things to slide - I don't need to dust all the time. Some days the bed doesn't get made - like today. Living alone gives me the freedom to eat when I want and get to bed when I need to.

I find I can be more social than I ever was before. I am more likely to start a conversation with strangers. Living in Ontario I have lost the anxiety I used to have living in Quebec (French language issues).

Granted there are some things I miss - my bike for one. The chair goes faster than people can walk but the bike gave me the speed I liked. Plus I could go a lot further than I can with the wheelchair.

I really miss working. I loved what I did as a counselor for abused women. But the pain is still too unpredictable to commit myself to even short hours.

Life is an adventure. Just change the perspective and you might see life in a very different way.

choosing life

MsMcDucket,

Thanks for the reply and the videos. The funks can get pretty low, part of what I was talking about. It must be difficult with both of you being disabled. I'm constantly working on the acceptance part of it. I was always very physically active and I hate it when people look at you like you're just lazy because you can't muster up an ounce of energy.

Lady Lee,

Sounds like you find ways to keep going in spite of your limitations. I love to be outdoors also. You mention pain and that is my biggest limitation. Pain meds don't help a lot. Sometimes it is just hard to enjoy anything you do when the pain levels are extreme. I miss working too.

R.Crusoe

I think a more difficult place is when you lose what you had and now have no idea what you want!

A sort of twilight zone you are placed in that you never anticipated and no amount of meditation or thought brings any ideas whatsoever as to what you want - complete void!

free2think

I just try to take one day at a time.

I have ok days and bad days lol.

For me having a positive attitude helps, and enjoying what i can.

Lady Lee

Pain meds don't help a lot. Sometimes it is just hard to enjoy anything you do when the pain levels are extreme.

Be open to experimentation under your doctor's supervision.

Initially my dr put me on an anti-depressant. I was highly skeptical.. But anti-depressants have been highly recommended for the treatment of many kinds of pain. I find they help me relax enough to sleep well at night. As you probably know if your sleep is interrupted by pain you aren't going to do well the next day.

I then tried anti-inflammatories (I did have swelling so it was a possibility) And it seems like it worked for a short while. But then they wound up making it worse - most likely because the root problem isn't an inflammatory problem. But it took us 3 different anti-inflammatories to figure that out.

Then we tried SSRIs which really made things much worse.

Tylenol #3 put me to bed and my head swimming when I got up. It was dangerous because I was staggering every time I tried to walk

Then I moved on to the anti-convulsants. One did nothing, the next had the same effect as the T3s so I was really dubious of trying a third. But hey at least I could say I tried it. And IT WORKS!!!

So my combination of drugs is

Tylenol Extra-Strength (1000 mg tablets 4 times daily) -acts as a booster for the other meds
Amitriptylene (150 mg before bed)
Gabapentin (300 mg 4 times daily)

Gabapentin and Amitriptylene in combination are the first choice for neuropathic pain.

These drugs do nothing for my arthritis although the Tylenol does help a bit.

Not all pain can be treated the same way. And no one combination will help everyone.

And I should add to this that finding ways to reduce stress, get enough rest, and eat well all goes to making the pain easier to deal with.

My daughter has told me I should not be hiding my pain from the grandchildren. I'm getting better at letting them know Grandma needs some rest time.

JWdaughter

I have limitations due to some foot problems of long standing. I also have some weakness(long standing deficiency related to an old illness) and anemia (related, but different effects, and can be treated somewhat) and balance issues. This means that walking off the sidewalks is not a good idea. Many stairs-well, it really has to be worth it, and I need to hold on to something or someone. Shopping for a few hours can wipe me out. Working on my feet is possible, but I am so exhausted from the pain itself, PLUS the exhaustion I have simply because of the anemia and trying to keep my balance. Walking is something I need to really mentally focus on so that I don't look like a drunk when I walk.

I try to be prepared, and sometimes put in an awkward position (The pioneer farm museum is accessible to me, but I found after paying for my son and I to go to an 'indian village' that I could not make it as the path was pretty rough (for me) without any rails. So he went with the other family in the group and I went as far as I could and just rested and waited.) Sometimes, I have had to accept the help of strangers-and boy, that is a pride killer!

The way "I" cope with it is to do what I can and not be ashamed of what I can't do. I can mostly do everything around the house that doesn't involve climbing, some gardening. I work long hours on my feet one day, and recuperate the next. (Am seeking a new job to tide me over till Boeing actually calls me in for training). When I can help others in a worse situation-I do. Most of us know of many others who have things tougher than us. It gives me perspective and helps to keep from feeling sorry for myself. I still do that sometimes!

My best way to cope is to do what I can and ask for help when I need it. Be prepared. Mentally and emotionally. Think things through. Everyone is somewhat dependent on others for something. Life is not a one man show. But we do need to be the star of our own show-and the best shows have people in them who are imperfect but learning and growing all the time.

zev

i could almost deal with the pain everyday. i'm on a "cocktail" of meds, all to avoid paid meds. i do have them, but allot of medication has strange side effects for me. they make me a insomniac. cant sleep. i do however force myself to go on everydaay to work. i'm afraid if i give in, that will be the end. the real killer is the fatigue. i'm seeing my r.d. thursday, and plan to mention it. she said the enbril was supposed to help that, but i dunno. of late its gotten so bad sometimes i can hold my arms up for more than a minute or 2. r.a. sucks. but anyways i just keep plugging along. when i run out of steam, thats it, game over, time too rest.

momzcrazy

I was also put on antidepressants, Cymbalta 60 mg. It has helped my pain alot, surprisingly. I never used to go a day without pain, but now it is more infrequent as each day passes.

Now, I know my limitations. After 20 years of undiagnosed muscle and joint pain I have had to work out alot on my own. I need to accept when I need to stop and rest. I also have a wonderful friend who tells me to stop what I am doing and talk to them. I don't always like to stop but I am sometimes forced to.

I almost don't remember not hurting all the time. Sometimes I have to play with the kids on the couch. Sometimes I have to cheer them on from the proch while they ride bikes. But today I rode with them, and I am praying I don't pay for it tonight!

momz

Living With Limitations

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