How have you resigned yourself to being disabled?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Dec 2010
Total Posts : 213
   Posted 9/12/2011 8:34 AM (GMT -6)   
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!
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.

Regular Member

Date Joined Sep 2011
Total Posts : 58
   Posted 9/12/2011 9:17 AM (GMT -6)   
I understand how you feel, I spent my whole working career in construction, mostly painting, and am no longer able to work due to the pain. I have applied for SSDI just waiting on my first denial:) I too am having a VERY hard time accepting the fact I am disabled, it just doesn't seem right! My therapist has told me to try and just accept it day by day and find something rewarding to yourself to do in place of working. Of course, I have yet to find it! I hope you are able to find something to replace that feeling, keep posting and carpe diem!
intercostal neuralgia, degenerative disc disease, atherosclerosis, depression, & anxiety
meds: gabapentin, oxycodone 30 mg, lipitor, xanax, effient, cymbalta, carbamazepine

Veteran Member

Date Joined Oct 2010
Total Posts : 932
   Posted 9/12/2011 2:00 PM (GMT -6)   
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 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.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 9/12/2011 2:58 PM (GMT -6)   
Trudy, a lot of us here have felt what your experiencing, but just because your life is
a little more complex in how you can do things, try to remain positive, there are
things that you can still do, being disabled does not mean we are worthless, so I
do hope you can over come that feeling, Think about all the people you do help,
the things you can still do. Maybe consider seeing another psychologists to help when you
do feel this way, there are ones that can help, it took me 4 tries to get one that I
can trust now...The hard part for me is not being able to drive like I used to,
or enjoy a car trip. Next weekend is family weekend at my daughter's University and its her
last year in the Marching Band and I have to miss it, but my husband will be going and bringing home
photo's, that'll help. I'll be getting a quad cane soon, so yeah that makes me feel a bit worse for wear, but
at least I can still play with my kitties, I can still do my needlework...Maybe trying to get a hobby would help
do you knit or crochet? Hospitals can uses little hats for new borns to keep them warm...and trudy you
can give great advise to other here on healingwell. Your worth value...
well wishes and I hope this helps...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 9/12/2011 5:14 PM (GMT -6)   
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,
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Regular Member

Date Joined Apr 2011
Total Posts : 99
   Posted 9/12/2011 5:15 PM (GMT -6)   
Oh, I am so sorry for what you are going through. Chronic pain affects every single aspect of our daily lives and can make things extremely challenging. I, too, have anular tears, herniated discs, DDD, arthritis, myofascial pain, IT band syndrome, and so on as well as fibromyalgia and celiac disease. I do not work by choice but even if I wanted to there is no way I could. I lie on the floor to watch TV; I stand to eat; if I must drive further than half an hour my husband must come to drive as I must lie down in the vehicle. I literally cannot sit for very long at all. We had company this weekend and I had to lie on the floor to visit with them. I can no longer do my needlework because I cannot sit. However, I cannot allow myself to think about my limitations as it can really discourage me. So, I focus on what I love to do - COOKING. And reading. Two things I can do that do not involve sitting.

I have massage every week, had acupuncture and chiro treatments umpteen times, coritsone and trigger point injections, laser therapy, ultrasound therapy, have been on over 20 meds and have found no relief. I am a master gardener, too, but cannot do much of that that any longer. I do adapt, however, by spreading out a blanket on the lawn when I need to weed my flowerbeds that my husband did for me. He also built me high raised beds so I do not need to bend to care for my vegetables.

It does wear on me at times when I cannot sit in church and have to stand in the back or see people sitting to watch TV - how can they DO that? I am extremely thankful to have a husband who does what he can to make my life easier and happier. He is incredibly understanding and patient. I feel useless at times as a wife because I am always sickly and we must cancel things over and over again because of pain and sickness. However, my husband makes me feel useful and focuses on the yummy food I cook and so on. Support is CRUCIAL!

Whenever negative thoughts come into your mind try to will them out. Sounds so cliche but it is so true that if we focus on the negative our pain becomes worse. Believe me - I used to do that so speak from experience.
Back injury 2007 with 3 herniated discs, IT band syndrome, myofascial pain, DDD.
Rotator cuff injury both shoulders.
Rheumatoid arthritis back.
Diagnosed with Celiac Disease February 2011.
Diagnosed with Fibromyalgia April 2011.
Insomnia forever but worse the past few years due to pain and discomfort.

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 9/12/2011 6:41 PM (GMT -6)   
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.


Regular Member

Date Joined Apr 2011
Total Posts : 235
   Posted 9/12/2011 11:10 PM (GMT -6)   
Trudy2, oh yes I totaly understand how you feel !I have thoracic outlet syndrom and not only unable to work ,but can't drive or do much of anything the more then 20min at atime.I'm going for surgery on sept 26,can't wait! It's hard to deal with not being able to do stuff you once could!!Best to focus on what you can do now.You should be proud of what you been thur and the strength you have for doing it ! You are far from useless ,your just having a hard time adjusting.I have many days when I felt this way ,but Itry to change my thinking ,why be hard on yourself when its not your fault?We can only do the best we can with what we have !Seems to me you have been thur alot ,thats something to be proud of !!takecare from michele

Regular Member

Date Joined Nov 2010
Total Posts : 38
   Posted 9/13/2011 6:15 AM (GMT -6)   
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.

Forum Moderator

Date Joined Feb 2003
Total Posts : 16788
   Posted 9/13/2011 3:33 PM (GMT -6)   
Hi Trudy, well you can see there is a bunch of us that have been in your shoes. I was one of them. I have worked all of my life, my first job was at the age of 13 washing dishes at a pizza place. Everyone is so different in how they can adjust or handle things.

It was difficult for me to accept me as I am now, I can assure you. I had worked as a paralegal for over 20 yrs and loved it, each case was different and the work was very rewarding. I just assumed I would be working for a very long time, not retiring at the age of 49.

Acceptance is a bitter pill to swallow. I decided that I wanted to live again, and you have to make a new life for the new you.Try to not compare yourself to the other you. When I would get really down I would look around me, there is always someone a lot worse off than we are. I tried harder at being thankful for what I can still do and stopped kicking myself for what I can no longer do. I still have my pity parties but I do not allow them to last longer than 24 hours.

I too had to seek professional help and my psychologist was wonderful. I know you are seeing one, but that does not mean it is a perfect fit either. Perhaps a change would be helpful.

I am still a work in progress and probably always will be and thats ok too.
Moderator Chronic Pain Forum

Regular Member

Date Joined Dec 2010
Total Posts : 213
   Posted 9/17/2011 10:26 AM (GMT -6)   
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.

DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 11:34 AM (GMT -6)
There are a total of 3,005,677 posts in 329,250 threads.
View Active Threads

Who's Online
This forum has 161796 registered members. Please welcome our newest member, Crispy Mango.
259 Guest(s), 5 Registered Member(s) are currently online.  Details
SoMuchFun, Deep_sleep, JoHnGaMeR90, Anitas, fiddlecanoe