Why can't I work?

[xsfxsf]

I'm unemployed, have been for years. But I know there are many people who are more disabled than me (T3) who can and do work. I have use of my arms and hands.

Why can't I work exactly? Maybe I can?

For me, well, bowel program takes up an average of three hours a day, but it's unpredictable so it would be hard to set a work schedule. I just can't do colostomy I just can't see it, and what's the point of an extra 3 hours a day, what would I do with it?

Cathing takes me 20 minutes per time when I'm up (less if I'm already in bed of course, but dressing and undressing takes a while). And of course all the little things that come up, dressing, wheelchair breakdowns, just little things, these take time.

I also find sitting up for long periods to be exhausting. I get bad edema, I've already had one DVT and am concerned about it. I tend to have pain if I am up too long too. So I prefer to lie down frequently. I'm also quite concerned by pressure sores, although I haven't had a serious one, and if I am up for a long time I tend to get somewhat red. I try to weight shift but I find these get very tiring too and I sometimes forget which is why I like to lie down frequently.

Stamina seems to be one of the main things, I get exhausted when I'm up very long. But I don't know that this is disability-related.

I find myself asking myself this partly because I do see people working. Also I find myself having to fill out forms saying I'm disabled and cannot work, and I'm not even sure sometimes. Of course, whether someone would hire me with all the requirements and problems and lack of recent work history and lack of stamina is another issue (not really an issue, no one would hire me at this point). I'm unconvinced that depression and not physical issues are not part of the reason, I'm at a point where I have difficulty seeing any purpose in anything.

It's not just work, I am down to basically a social network of one person, a friend I knew when I was able bodied, so I can go weeks and only see a housekeeper or delivery person. I'm at a point where I can't do much, don't have much money, have little in common with anyone, and don't really see the point either. I can see how some people, like the people who set up this web site, make like life better for some, but I just for me everything seems purposeless.

I don't know what I'm asking.

Edit: OK I thought about the above, and I realize I don't come across well.

[triumph]

I'm glad you posted this. It's important, not unusual, and your comments raise questions and concerns. First, it seems you are paraplegic, and since the general public does not expect that disabled persons can work, you are free to develop a non-working life if you wish, no need to explain to anyone. However, there seems to be an element of discomfort in your life - are you comparing yourself to disabled persons who work? "Work" is not a person's identity. It's not always what it's cracked up to be. Someone once told me when I was agonizing over my time to retire: No one ever had inscribed on their tombstone "I wish I had accomplished more at work". (I am paralyzed but not SCI, so different daily issues.)

The most important point in your post, IMO, is that you report few social outlets. Maybe your social network is the one that's disabled and needs "work". Many persons benefit from working on something like this with a counselor/coach, to discuss techniques for moving in a different direction.
Hope you continue to post on this as I think many here may share your thoughts.

[lynnifer]

I was paralyzed at 12, left home at 18 and been working steady since age 19. I had 18yrs of benefits (13 with pension and short/long term disability benefits) and lifetime drug/dental/extended healthcare (naturopath, massage, psychotherapy, vision, medical equipment etc).

For the past 5yrs at least - I had all the issues you describe and it was really tough. It was easier when David was around to help out at home, but on your own it is VERY tough. My neighbour is a teacher and we were just having a discussion about this as he is single too ... it is hard for ANYONE when you're on your own and must take care of things at home and work full time.

Something I notice - all of us that work used to complain in private and dream about pulling the medical card out .. lol. I finally did. I could no longer work as pressure sores wouldn't heal and bladder issues, now bowel issues, become unpredictable and unmanageable. I miss it ... but I don't miss the fatigue or constant health issues (though I'm still having those!).

If you're unsure you should try it!? It would cure your ails for sure. Part-time - something flexible. Hospitals are great because there's lots of jobs for different skills and levels of education ... I imagine colleges/universities might be the same. Both in Canada would offer benefits and good pay.

Anyone would understand about your disability and years and non-work. Just be honest with any prospective employer. Honestly was always the best policy for me.

There's nothing wrong with not working either. Maybe volunteer somewhere?

When I get better, I'd like to take Emma my dog and get involved in hospice.

Working really does expand your social life, not to mention the benefits, pay and self esteem of contributing. If one can, I highly recommend it.

[baldfatdad]

Volunteer. No clock. Do what you can. VA, hospitals, library, church, food pantry, with/help someone with a more difficult PWD than you. I go pick up trash in my neighborhood, if I have nothing else to do. Its kind of started a trend here.

[canuck]

Sorry I have to ask but how on earth can it take 20 minutes per time for a para to cath? I'm T11/12 I just roll into the bathroom wash my hands, undo my pants, open a catheter, lube it, place the kidney basin/emesis basin, in my lap insert the catheter, pee into the basin, pull out the catheter when I'm done, dump the urnne in the toilet, toss the catheter into the garbage, rinse the basin with water. do up my pants and I'm out of there. probably about 10 minutes max. When I'm travelling I just use a small dishwater detergent bottle to drain into. The detergent bottle can be tricky for larger volume caths because it can fill fast and the catheter can act like a siphon when you pull it out but it's doable.

[Andy]

On the flip side, you might find that if you are working full time, it seems like you only have 2 or 3 hours of 'you' time in between all that is needed to work, get to work, keep house, etc. Or start losing getting enough sleep. Things are surely different than the work/life world without SCI. One could argue that working is putting a serious crimp on quality of life, and not working would actually be preferred. But that is my thought on the subject after some 12 years of being a 'productive citizen' with SCI.

As it turns out my work says things will become rather annoying to continue to work at some point in 2016 per the latest news...and while torn that I probably wont be working anymore due to SCI issues I'm sure...I am actually relieved that there is a conclusion to this seemingly painful drudgery of 'working'. I guess the grass being greener on the other side of the fence applies on both sides. I know this: I sure feel a whole lot better after several days of not doing that routine

[xsfxsf]

Sorry I have to ask but how on earth can it take 20 minutes per time for a para to cath?

Mostly dressing and undressing, reaching around for stuff. Dressing is time-consuming for me. In bed it's much faster. Also, I'm older, very overweight, use sterile technique, things just take time.

[canuck]

The other issue of not working is lack of income, unless you're in a job that has great benefits and you've been around long to get them not working puts you into poverty. Granted I don't know how well U.S. social assistance pays but I'm sure it's not great.

[canuck]

I might have made the wrong assumption on your gender as well, I can see cathing taking longer if you're a woman. But for a guy I don't really see a need to get undressed to cath. I've also been cathing for roughly 35 years give or take so I have the procedure dialed in to make it pretty minimalistic.

[ancientgimp]

Mostly dressing and undressing, reaching around for stuff. Dressing is time-consuming for me. In bed it's much faster. Also, I'm older, very overweight, use sterile technique, things just take time.

Recommend that your 1st priority be weight loss to improve health. If you have transportation you may want to combine weight loss with reintegrating back into the community by maybe joining Planet Fitness or some other gym. There is often a vicious cycle of chronic depression feeding into social isolation, inactivity and accompanying weight gain. There is another active thread right now where a board member is describing how much easier transfers and activities of daily living are since a recent weight loss. If you can experience some success in weight loss and gaining fitness it could go a long way toward lifting depression. Don't even worry about working for now.

[Andy]

If you don't mind me asking, what sort of SCI issues are brewing for you? I noticed in your history on this forum, you went from T10 incomplete now to T3. Maybe those issues are far and beyond the usual SCI limitations when it comes to working and should be included when making a comparison to others?

[xsfxsf]

If you don't mind me asking, what sort of SCI issues are brewing for you? I noticed in your history on this forum, you went from T10 incomplete now to T3. Maybe those issues are far and beyond the usual SCI limitations when it comes to working and should be included when making a comparison to others?

Yes, I went from T10 many years ago to some partial T3 symptoms, most likely from a syrinx, but after so many spine operations I don't want to mess with an anti-syrinx operation, I've heard horror stories. I've been steady at T3 for years now though, I doubt things will change, more worried about aging than the syrinx frankly, since I can barely make the transfers I need to now. I don't even talk to neurologists, much less neurosurgeons, any more: they never have anything helpful to say, never really have had either. I came to this situation kind of late in life and I don't seem as adept as some younger people, never did master a transfer board for instance, so I can't get in and out of cars, and I seem to spend much of my time missing things that are missing nowadays.

[SCI-Nurse]

You have gotten some good advice. From your OP, I would recommend that you look at the following:

• Get some help with determining why your bowel care takes so long. Not safe to be sitting up on a commode for 3 hours! Consider a colostomy more seriously if you have started to develop a megacolon.
• Loose some weight. You will be less fatigued, transfers will be easier, and so will weight shifts. Cathing will also be easier.
• Learn how to cath more easily and quickly in your chair. Do you have a pant holder (Betty Hook)? This can help a lot. Using a mirror can help with your obesity problem until you loose some weight.
• Use compression stockings to help prevent and manage your edema. There are "tricks" for putting these on, so if you need advice on this, post here.
• Have a seating evaluation done to be sure you are really in the right cushion.
• Do you use a manual or power chair? If a power chair, can you get a tilt-in-space seat to help you do your weight shifts? A manual chair will of course help you burn more calories.
• What method do you use for doing weight shifts?
• Can you use a watch alarm or cell phone alarm to remind you to do w/c weight shifts more consistently?
• Do some type of cardiovascular exercise. This would help with your endurance, increase your arm strength, and help you burn calories. Swimming, hand cycling or even the use of a table-top ergometer are good ways to do this.
• Find a reason to get out of bed and out of the house daily. If you can't work, then consider volunteering, perhaps at multiple places.
• Talk to your provider about treatment for depression. You sound pretty depressed here: "I'm at a point where I have difficulty seeing any purpose in anything".

(KLD)