How have you resigned yourself to being disabled?

Hi all,

I read here almost daily, but I do not post a lot.

Lately, I have been having a lot of trouble dealing with the fact that I can no longer work for a living. I am feeling very useless. I know that if I could work, I could make a lot more than I am on disability - which my family really needs right now.

I have been sick on and off since 2003 and got disability in 2004 for Acute Myelogenous Leukemia. I had a bone marrow transplant and due to complications from the transplant, I am left disabled. I cannot sit or stand for long periods of time. I cannot be in heat at all. I have chronic kidney disease stage 3, chronic pain (annular tearing at L5-S1 with multi level herniated disks in my back as well as pain and swelling in both hips), vasovagal syncope, small nerve fiber neuropathy in both legs, marked fatigue secondary to chemo. I also have obstructive sleep apnea, hypothyroid, DOE (shortness of breath on exertion).

Previous jobs were restaurant manager for 13 years, candle-maker/business owner for 5 years, restaurant worker for 1 and 1/2 years (just because I did not want the responsibility of management anymore), and I even worked in a warehouse for 6 weeks.

The other day I was out in a car with a friend and I saw a produce delivery truck that used to deliver to us when I was a manager and the memories just came pouring back. I miss my old life so much and I find it so hard to deal with the reality that I cannot work. Yes, I have talked this over with a psychologist and that has not helped me so far. So I am coming to others that I know have had to face this same situation for guidance and support.

Thank you for any info you can help with!
Trudy

Though I am still able to work (mostly from home, however), I'd like to emphasize a point made by badheartdude: find something rewarding, something that you feel challenged by and can allow you to experience some progress through your efforts.

That could be learning a new language, learning to play an instrument, taking online courses, setting up your own "courses" by way of a reading list on a topic you're curious about but haven't had the time to work on.

I know that depression can make just about anything seem uninteresting and/or overwhelming, but in my experience, after some initial internal effort, you can find a momentum that keeps you going.

So, if I may be so bold, how about ask yourself "what do I want to know more about", then find 3 or 4 books on it, buy them (try thriftbooks.com if money is an issue), place them in order, and start the first. I've gone through some very severe depression in my life and I've found that some consistent doing -- however hard it is to start -- has helped. At the worst point in my life, I decided to learn about Buddhism, bought a variety of books and read them. It seemed a suitable topic given my suffering. I have no religious affiliation, but both the process of just learning something new as well as its psychological perspective, helped me.

Hi, I am Kathy, I have been disabled for a very long time now.  The best I can tell you is to try to concentrate on what you can do not what you can no longer do.

I hope it does not sound like this is simple, its not, in fact it is very difficult.  But with time and help from others you will find that what your life once was will never be again, but you still have a life.  Concentrate on the life you have.  Again, its not easy, not at all, it might be the most difficult thing you have done, but you can do it.

You will know, because you will find it easier to get up, you will find yourself smiling more.  It will not happen overnight, but it will happen if you allow it to.

Take care,

Kat

Chanterelle, you said it all so well. I couldn't have said it any better. So thank you.

I lost my dream job this past April. I am a paediatric nurse having worked since 1979, 25 of the last years on the same unit.

I miss looking after those kids so so much. I will not be able to return. My grad pic stares me in the face every day. How I miss

my job.

I feel like a have lost the person i was, in fact I have. And like you said i must make a new life with the things I can do.

It's still a struggle to push myself to do something. Some days are better than others. If you like to crochet like myself,

well you can do it laying down. LOL. That's what I do. I also am a scrapbooker and i am trying to get into my craft

room, having recently made a few cards. I also like beading and need to try to get back into that too.

One big task i accomplished last week was starting to go to the gym. It's difficult as my headaches are so severe, even

with my ice pack on. For instance today i left in tears after doing only 25minutes on the treadmill and bike. I'm

sure in time it will get easier.

Like you I am lucky to have an understanding and supportive husband. I actually pray that everyone who suffers

chronic pain can have a good support system. It certainly helps get thru those rough days.. I feel badly for those

who are alone.

So I am a work in progress, one day at a time.

I really do understand where you all are coming from.

Hugs
Suzane

I also have Thoracic Output syndrome. I had to stop working and give up so many things like fishing, and I struggle with writing which I love. I can't raise my arms above my shoulders and am in pain everyday. But I am thankful my legs are all right and walk everyday with my small papillion.  Also, I thank God for books and book holders. I am resigned that my shoulders will hurt forever.

Sorry that I posted the question and then sort of disappeared for a few days. We had a family crisis.

Finances in our home are an issue as my husband has been unemployed now for just over 2 years. We also have 2 teenage boys that currently still live with us. The youngest is a senior in high school this year. Our middle child (oldest boy) was all set to be in the Navy, he went to boot camp and was medically discharged just a little over 3 weeks later due to double vision (diplopia). So I know that both my husband and my middle child are depressed. My husband much more so than my child is. The entire house is tense and irritable because we all know the financial situation.

I did have a hobby - I used to love to do counted cross stitch. I have not been able to concentrate on it in months and when I have tried to sit down and relax and do it, it just makes me more irritated. I went to the library and took out some books - I am a fiction mystery/suspense thriller reader. I have managed to read a few of those books, but it is even hard to concentrate on the reading long enough to get interested in the books.

I do like to cook, but the heat of the stove/kitchen area does get to me rather easily so I have let my DH take over most of the cooking. I do still handle the family finances, I always have when I have not been hospitalized. I do the grocery shopping for the family with assistance. I either have to have a friend, son or DH has to go with me as I cannot do all the loading and unloading. I am not supposed to do any lifting, but I have done a little bit when necessary with the groceries or a load of laundry. If I am doing a lot of walking or shopping or it is too warm out, I have to be careful from the heat and the syncope.

I have found a new psychiatrist. I was last seeing a male pain psychologist and he taught me cognitive behavior therapy and we talked through some of my issues, but he could not help me with everything. I now have a new female psychiatrist and she upped one of my anti-depressants and my clonazepam on my first visit with her. She even returned my call this past Tuesday herself and talked through my weekend family crisis with me. I was pretty impressed with that seeing as I have only seen her once and I am already calling the office and asking her to call me back because of crisis situations.

My legs are still pretty weak, even 7 years after transplant. The muscle strength has just never come back to my arms/hands and my legs. Anyway, one flight of stairs wipes me out strength wise with my legs and leaves me short of breath from the exertion. Doesn't matter if i am going up them or down them. My husband and I have the upper level, which is an open floor plan along with a large walk-in closet and a half bath. The main level of the house has a full bathroom, living room, kitchen/dining room, office, and one more bedroom. There is a semi-finished basement that has 2 storage rooms, a tool room, 2 bedrooms, and my laundry room.

I have done quite a bit of walking and it has not strengthened my legs the way I thought it would. I am not allowed to work with any weights at all, so I cannot strengthen them that way either. I recently took a pretty nasty fall with our larger dog and for my own safety my husband has asked me not to walk the dogs alone, he wants me to wait until someone stronger is with me and I take the smaller dog. So I have abided by that as he is probably correct in his request right now.

I do realize that I and my body have been through a lot and have put my family through a lot. I also realize that none of it was actually my fault either, but it doesn't keep me from feeling useless at times. I am proud (not sure if that is really the correct wording to use) of the fact that I was strong enough to go through everything that I did. I am thankful that I am still here and I know exactly who to thank for that. The good Lord above, without Him I wouldn't be here today.

Anyway, I do find it difficult to accept the fact that I can no longer work and possibly won't for the rest of my life. This is not an everyday thing, just a once in awhile thing. It just seems to hit me at strange times and then nags at me for awhile before the thoughts go away again for awhile.

I do have to say that I love my pain management doctor and I have a lot of respect for him. He is great at adjusting medications and when you have an appointment, he actually LISTENS to what you have to say when you are in his office. My chronic pain is under the best control right now than it has been since we moved into this house in June of 2007.

So I have now elaborated on my situation just a little bit more. Sorry this turned into being such a long post!! I do appreciate all of the replies and advice! I am normally a positive person. I am on 2 different anti-depressants and they seem to be doing the trick most of the time, it is just that sometimes these thoughts intrude.

Trudy