First job since my injury.

[dylankrapf]

I start my first job since my injury on January 4th and I have a few questions for paras with office jobs. Do you sit in an office chair, or your wheelchair? Why or why not? Do you do the recommended 30sec weight-shift every 30 mins? How do you manage your pain over the 8 hour work day? What do you do if you have 'unbearable pain' where most of us just lay down and try to sleep the pain away?

I guess I'm just a little nervous with dealing with my pain on a day to day basis and I'm afraid of pressure soars. If I sit too long (weight-shifts or not) I get an intense pain in my butt that no narcotic or nerve pain meds can help.

Any advice? Thanks....

[lynnifer]

Get lots of rest (or laying down time) and get adequate nutrition for your skin! Congrats and good luck!

[woman from Europe]

I am going to ask the most stupid question. I am wondering and it is not a joke. When you get a job, do you get paid and do you get the same wage as the AB people doing the same job.

If I am lucky enough to get a job, I don't get paid. I work for free and they continue to pay me disability money. The only thing extra I will get is a taxi to the job since the tram and buses are not accessible here.

They call it work with aid even if you don't need any help and know your job. They say it is to help people to get out in a normal job but that is happening very seldom, the moment the State wants the employer to pay, it is a 90 % chance you loose the job. Usually that is about six month.

I think that system is so bad, I have worked like that twice and the last time they didn't even let me do the usual job. I am a doctor's secretary and the only thing I done for six month was putting MRI cd in envelopes and write the name outside. I was not allowed to write any journals, not allowed to take the phone, not allowed to take the referrals from the doctor and write it in on the computer and not allowed to take blood test.

I felt really small, the people did look at me as I was psychic disable and they didn't even want to eat with me. One of the worse experiences I have had.

[TAM63]

Oh my god Bente, that sounds terrible. Of course you felt awful, and didn't want to do it! I honestly am appalled.

Yes, here, any disabled person who does a job would be paid exactly the same as an ab person. We have specific discrimination laws that would require that.

Depending upon the type and how much of disability income the person had, they might get their disability income in addition to what they earned working.

But working - you do the work, you get paid the salary.

[McDuff]

If your job "absorbs" your mind, it can be a good thing with respect to the neuro pain, and a bad thing for pressure relief. If your mind is occupied, you may find you notice the pain less. But you may need a timer of some sort to remind you to do lifts.

On break times, find a place to roll around, get some exercise. This will get blood pumping and also take your mind off things.

Bad days are bad. No real good ways around them. Not sure what to tell you on those, each person is different. Hope you have a tolerant employer, that will make it easier to work around things. Any possibility of working from home on those days?

If you are worried about pressure sores, I would stay in your w/c. Your cushion is designed to provide support without undue pressure, a normal office chair is just a foam seat with tight cloth cover.

[duji54]

best wishes for the new job. i was told by pt/ot that 60 sec. shifts were to be done every 30 min. shifts could be side to side in chair, elevate butt off chair with hands on w/c, also stretches across desk or table takes pressure off butt. hopefully this can be useful for you. i am a t-4 complete and i do not work.just offering you my pressure relief suggestions.

[crags]

Yes, days can be long. Even an 8 hr day can turn into a 15-16 hr stint in the chair with extra time for ADL, bowel care etc.

Stay in the chair. you don't want to be in a busy, or in my opinion, any work environment with people calling you to come here, come there, etc and you're bouncing back and forth. that micro trauma can lead to sores.

get nice fitted wheelchair clothes (too bad rolli moden stopped US sales). get correct footwear to accomodate swelling. stay hydrated.

most of all, try, try, not to let your mind overwhelm you. you can really do yourself harm by letting the demons (some imaginary/some not) destroy you.

it's going to be a severe test of your adaptibility, much more so than AB work experiences.

do prone time in the evening, if you need to read, get a reading table and do it on the toilet to save time, or do it prone. rest on the weekend. if need be, take work home. talk about remote access, though not at first. try hard, read, be informed, keep eye contact. manage your bladder before situations that can be rough, such as mtgs or not near an access bathroom.

good luck, keep us informed.

oh yes, most important, if you're offered short and long term disability suppl insur, take the max, typically 66% of income. you can never tell. it saved my life, at least till i'm 65.

[SCI-Nurse]

Definitely sit in your wheelchair, and do regular weight shifts. An office chair will not provide either the postural support nor the pressure reduction you need as a person with an SCI.

Is there a staff lounge or someplace you could lay down mid-day at your lunch time? I worked with a social worker in my previous job who had a T8 injury, and she would always lay down prone on the sofa in the staff lounge at lunch and eat her lunch prone. It got her a good stretch, and off her backside, and helped her pain significantly. We used to chat while we both ate our lunches. Having something like this available to you could be a reasonable accomodation that you request from your employer to enable you to work at your highest level of functioning.

(KLD)

[rdf]

Congrats on the job dylankrapf. When I worked daily at the office, I'd sometimes use a high backed office chair just to get out of the wheelchair. It's nice to be able to lean all the way back and completely relax your whole body without worry of going over, but I don't know if you experience that at your level. I'm T5. I do shifts more often than every 30 minutes, but not for 30 seconds. Usually I do about 10 shifts an hour for about 5-7 seconds. But as McD noted, once you get involved in a project, the time will fly by and you'll have to somehow remind yourself to weight shift. I do it even when not thinking about it after so long, no matter what I'm doing. It's now hard-wired into my system, no doubt.

I rolled around the parking lot during lunch just to get outside and do a little exercise. We had a gym, and when I went to work there, they odered and installed some disabled-friendly equipment. But I didn't go there much, due to the politics of the place being the main topic.

Didn't take breaks. I wish you the best of luck, you'll get it figured out after a little while.

[dylankrapf]

Thanks everyone, for the great advice. I guess I'll be using my wheelchair primarily but I'm also looking forward to stretching out and leaning back in an office chair. I've never really done the standard 30sec push up every 30mins or whatever they recommend, but I never really sit still in my chair, and I'm constantly doing short ~10sec push-ups, so although this has worked fine for me this past year, I think I'll set a little timer to ensure my skin stays healthy and sore free. One of the great things about the job is that I can work from home 2 and sometimes 3 days a week, once I'm up to speed with the company.

I'm really looking forward to my work consuming my mind and it off the pain and really just having a creative and productive outlet for my over-active brain would be great. I really never thought I'd say this, but I really miss working. and btw - a little mary jane will kill those demons in your head real well.

I'll be working in Center City Philly, so I'll be getting plenty of exercise getting to and from work on the nice days and wheelin' around at lunch. I'm also thinking of bringing in my yoga mat thingy and throwing it in a conference room to do some stretching on lunch breaks. It's a young company and I'm in a small office, so I don't expect much of a lounge area, but a good friend with a big office and a big comfy couch works in the building, so I may be visiting him often.

Check out the company I'll be working for www.RecycleBank.com

Thanks again for the advice and best wishes. Have a Safe and Happy New Year!!

[rdf]

You might want to take out any references to mj, now that you have a job. Some employers do searches on the Internets for any info on their employees.

Good luck, glad you're back to work.

[dylankrapf]

haha, my name is tied to MJ a million times on this internet thing, i forgot they did that stuff these days. I'm guessing if they wanted to search for me, they would have already, but thanks for the heads up!

I'll keep yah posted on how the job goes!

[sharky]

Congrats on the job. I actually prefer to get off the chair at work. I tried multiple office chairs before purchasing the "carmen chair: http://www.scandinaviandesigns.com/office/chairs
from Scandinavian Designs. It's extremely pressure sore friendly, reclines like a lazy boy, and pressure releases are easy / comfortable with the arm rests.

You'll shell out some dough though, but will be a solid investment. I think it's also positive for AB folks to see you "outside of the wheelchair" so to speak.

Hope this helps...

[MarkB701]

I started going back to my desk job within 4 months of my accident. I viewed it as very important to keep that job for all kinds of reasons; keep mentally active, self-esteem, socially and financially. It is a well paying job with siz zeros after the first digit so I was always going to do all I could to keep it.

From a practical point of view I do all I can not to stand out:

- refuse special doors that would open electronically
- refused special desk (just modified the one I already had)
- I can walk with the walker, so I make it out into the open office are to chat standing up.
- I never roll to the coffee/break room, always walk and enjoy chatting with collegues standing up (with walker).
- REALLY try to avoid talking about anything SCI
- REALLY try to avoid doctor's visits.....you don't want to fit any steriotype that says HC people work less etc....


The only/best adaptation I did ask for was to get a small medicine cabinet bolted to the wall of the restroom (has toilet and sink in single room). I have the keys to the cabinet and store all my caths, soaps etc etc. It makes doing IC's super easy and fast.

I also still use my chair, office chairs on wheels are pretty useless....especially when you reach down to push off and find nothing but fresh air lol.


Anyway, Congrats, and good luck.....!!! And don't spend too much time on the internet....

[Lee1]

I still work for the same company that I did before my injury but in a different job. I have worked there for about 18 years, 12 years in the wheelchair. The only accommodation that I requested when I went back to work was a bigger stall in one of the bathrooms. I don’t bother with transferring back and forth from an office chair; I just work from my wheelchair. I don’t consciously do weight shifts every 30 minutes either, but I am very restless and always moving so I can’t sit in one position for very long, and I have never had any skin problems. (except for recently after an extra long ride on the handcycle, and it has seemed to heal up pretty well even though I still went to work every day while it was healing *not recommended*). Like MarkB701, I try not to fit the stereotype of working less, and I have never called in sick in the 12 years since I have been in the wheelchair. I did have to leave early once because of a bowel accident. Luckily I was able to sneak out without telling anybody why I was leaving and then called my boss and told her that I had to leave because of an emergency. I also have a problem with nerve pain, and I can’t really say that working helps me take my mind off the pain. Sometimes it gets so bad that I have a hard time concentrating on my job, but I have just dealt with it somehow. Good luck with your new job!