Living With Limitations

by choosing life 44 Replies latest jw friends

• 

  dinah

  Lady Lee,

  I have read your bio and stand in awe of you. You are one of the most beautiful peeps I've ever met.
• 

  LisaRose

  I have Fibromyalgia, which though not severe does limit me in many ways. It's nothing compared to what others have to deal with, but it does have an impact. I try to focus on what things I can do. I try to stay positive, as being negative only makes things worse. I find meditation and journaling helpfull, as well as anti-depressants, vitamins, massage therapy and accupuncture. After many years of working full time, I got laid off and now I have a small business. My husband supports me financially, but after years of supporting myself, its hard to accept that at this point I cannot. So sometimes I push myself to make more money in my business, and then regress back on the fibro. It's a constant battle.
• 

  MsMcDucket

  Try dating a person with a pelvic fracture, or a wound dehiscence, or a fresh amputation, or cancer with bone metastasis, or Lou Gehrig's disease....I could go on for days.

  I remember trying to put a bed pan under a patient with a pelvic cancer. It was one of the most heart-wrenching things that I ever had to do, getting the woman with the double mastectomy up , changing the bag on a new colostomy patient, the patient with pancreatic cancer...

  It's heartbreaking.

  When I had Shingles, I ate my pain meds! Forget the water!

  Some disabilities aren't physically painful; but they can be emotionally painful.

  I'm just rattling off. I guess, I do miss working!
• 

  Lady Lee

  Thanks Dinah I just lived one day at a time and tried my best not to become like the other people around me

  MsMcD

  I worked a couple of summers as a nurses aide for Alzheimer's patients - heartbreaking.

  I stayed with a deaf family when they had a family member opt to die at home. As heartbreaking as it was I wouldn't have decided to leave. Many people don't know the suffering that most people experience. You just get through it and hope to get a break every now and then.

  ---

  To be honest here I have had a hard time over the last few months. The new meds are doing a pretty good job of dealing with the pain. There are no more new tests to try. No new possible diagnoses. Therefore no hope of recovery. I have spent the last 5 years focused on finding a cause - a reason - something to say "This is it!" What i have instead is "This is most likely the best we can do and hope things don't deteriorate"

  I've spent so much of my life hoping things will get better - stop the abuse, find a cure. It ain't happening. So I've been in a mild depression - nothing serious - just no direction. So I haven't been posting very much. The winter has been harsh so I haven't been going out unless I had to. I have talked about it with my doctor so she is aware

  But I got out today and rode the buses and despite all the snow piled up, in some places 3-4 stories high and burying entire trees, I know spring is coming and I will be getting out more.
• 

  MsMcDucket

  But I got out today and rode the buses and despite all the snow piled up, in some places 3-4 stories high and burying entire trees, I know spring is coming and I will be getting out more.

  As long as you've got some fight in you, I think you'll keep plugging on. Hopefully, things will get brighter and something will uplift your spirits! Be it nature or science. I'm fighting *the funk* too; and antidepressants make me more anxious! It seems that increased anxiety is the side effect that I experience the most. I can't stand feeling like my heart is going to jump out my chest. So, we both have our problems with various medications. It is a challenge finding a good balance.

  You deserve to be happy! You're a good person!

  I know that was soppy!

  Hang in there. Spring is coming!
• 

  XJwFree2BMeWJC

  After reading your stories I'm hoping tomorrow is a better day for you all. There really are so many people suffering from chronic illness. It helps to know I'm not alone, yet I wouldn't wish it on my worst enemy.

  I am bored. I never was a house person, always outside every possible minute training my horses and enjoying nature. I've tried knitting and crafts...blah Started growing plants indoors that is fun. Spend all day on my laptop..I guess I have not adjusted yet. I haven't worked since 1999, I better start adjusting!

  My maladies are a genetic blood disease called hereditary homochromatosis. I have a severe case of it and absorb too much iron, it caused liver damage. The treatment is removing a unit of blood every eight weeks. It seemed to be the catalyst for the rest; thyroid disease, lupus, fibromyalgia, and lately chronic: virus, fever and rapid pulse.

  My current focus to better myself is discipline. Pain causes me to crave comfort food which causes worse symptoms and pain. I am trying to force myself to work through as much as possible and achieve SOMETHING. I could practice my guitar, record a song on friends equipment, stretch, make the calls I have been putting off, write songs and poetry...but I have changed...

  Lady Lee it has been a rough cold winter down here in Southern California, I can't even imagine what your winter was like. I am at the power chair threshold. Just can't bring myself to get one, it is like admitting defeat. Yet I rarely make it out of my house because I am too weak to walk. Did you go through an emotional episode making the transition to your chair?

  Love,

  Apostate Kate
• 

  Lady Lee

  MsMcD

  As long as you've got some fight in you, I think you'll keep plugging on.

  For me, the absolute worst in life is being and feeling trapped.

  I lived that as a child and suicide was sometimes in my thoughts.

  I lived that as JW and an elder's wife and suicide was almost always in my thoughts by the end.

  I never, ever want to feel trapped again. I will keep plugging along.

  So, we both have our problems with various medications. It is a challenge finding a good balance.

  Don't give up. Keep trying new med combinations and hopefully you will find one that works for you with no or at least minimal side effects.

  XJwFree2BMeWJC

  I am trying to force myself to work through as much as possible and achieve SOMETHING. I could practice my guitar, record a song on friends equipment, stretch, make the calls I have been putting off, write songs and poetry...but I have changed...

  Break any goal into small bits. I find any new project can easily overwhelm me. Breaking them down makes it easier to at least start a project. Mind you I'm being rather hypocritical here. I started to recover the seats on my dining room chairs - 2 years ago and haven't even finished the first chair.

  I am at the power chair threshold. Just can't bring myself to get one, it is like admitting defeat. Yet I rarely make it out of my house because I am too weak to walk. Did you go through an emotional episode making the transition to your chair?

  Freedom from feeling trapped. That is what it does for me. In my apartment building there is a young man who is paralyzed from just over the waist down and uses a manual wheelchair. He is totally dependant on an adapted van coming to pick him up and bring him back. Every trip has to be arranged a day ahead of time. So going out is never spontaneous. He feels trapped in his body and in his apartment. But he refuses to consider a power chair. Most likely for the same reason - he doesn't want to feel defeated.

  I see it totally the opposite way. If I had stayed with the manual chair I would feel much more limited in my ability to get out and do what I need to do, whether that is shopping, or doctors visits, or just taking a roll down a bike path or along a road to see what is out there. I take a camera where ever I go and as a result have captured some amazing photos - digital cameras are great.

  The bottom line for me is freedom to come and go as I please. Oddly enough yesterday I spotted 2 young men with CP in different parts of the city. Each was struggling to walk over and around snow piles. The man I dated with CP also struggled to walk. He had fallen so often and damaged his back so badly that his doctor told him one more fall could break his back. He would have been a lot safer if he would have accepted the use of a power chair. I don't understand why some people insist on walking when the potential to severely hurt yourself is so real.

  I've watched people suffer the pain of denial as they sweat and work to walk when it exhausts them. How do they enjoy anything when they work so hard to walk when their effort zaps them with pain for the next few days?

  I wear glasses. Without them I can't read anything. What is the difference? Baby boomers are getting older. They are using whatever they can to stay mobile whether that is a scooter or a wheelchair. They are so common here. Almost every time I go out I see at least one person out on a mobility device. We are out there and more and more of us are deciding that the freedom a device gives us, is more important than feeling trapped because going out is an effort that means suffering later. It just doesn't have the stigma it used to have.

  Something you might want to try the next time you do go out -- Ask yourself

  • How much easier would this be if I had the power chair?
  • How much energy would I have left over?
  • How much pain would I avoid?

  That's not to say a power chair doesn't have its limitations. There are some places I can't get into. Some places I can't get onto a sidewalk - especially right now with a lot of sidewalks still buried under 3 feet of snow. Stores can be a problem if the aisles or the cashouts are too narrow.

  I've learned to ask for help when I need it. I have devised a way to push a shopping cart around a store and still have one hand on the controls of the chair. (sort of like using the pedals of an airplane - I guess my short flying lesson paid off) And I am feeling more comfortable standing up to get something on a top shelf.

  I just do what I need to do to get what I need
• 

  XJwFree2BMeWJC

  Thank you Lady Lee for the encouragment. I'm going to talk to my doctor about it tomorrow. Hubby will be with me so it will be easier to discuss. I'm going to need something four wheel drive that can handle desert terrain. I would need something that tuff just to go out and visit the critters.

  You have overcome so much adversity and used it for good. I hope those that see you in your chair see the strong woman that you are.

  We are so much more than our illness.
• 

  compound complex

  Dear Friends,

  I am sorry for the pain you haved endured and continue to endure. When I read how many of you cannot walk - or barely so - I realize how fortunate I am to take my daily walk.

  For quite some time I was under the shadow of COPD and could barely work, make meetings and do my beloved daily saunters. Respiratory distress was part of daily life. Recent testing at the hospital indicates I was misdiagnosed for COPD though I have been told by my newest doctor that I am asthmatic.

  I can live with that. I am grateful for every day that I can breathe - 'When you can't breathe nothing else matters.'

  Bless you all for your courage!

  Love,

  CoCo
• 

  Lady Lee

  CoCo

  The day before my father died I saw him. He had been a 3 pack a day smoker for many many years decades. I watched as he fought for every breath. Even with the oxygen mask he struggled. What a terrible way to die.

  Take good care of yourself