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Not sure how to respond...

SavageSavage United StatesPosts: 5,427
edited 06/11/2012 - 8:52 AM in Depression and Coping
to people...friends and family...that are commenting about how I am functioning.
"You weren't limping 10 minutes ago. What's up now?"
"Sometimes you are holding your right side...then your left side. I've never heard of pain moving around like you say you have."
"How can you double over in pain after eating only.. sometimes? If you're sick, you'd be sick all the time."
And people look at me with furrowed brows...like they don't know what I'm talking about. That's when I know my speech is impaired. I'm also having greater difficulty,sometimes, understanding the words when people are talking to me.
I feel like I'm in the Twilight Zone.
After the stroke in Jan., my right sided weakness also has varing degrees of strenght and ability. And sometimes I need to concentrate to open my left eye.
I'm in pain everyday...varing degrees...varying locations. I don't even get it myself. Sometimes with conversation it's like I "wake up" in the middle of it. I'm confused.
I'm so tired.
Difficult to believe, :) but I really try to be so positive when with people, but again, it's like the Twilight Zone.
Spine-Health Moderator
Please read my medical history at: Medical History



  • Sorry to hear. Are you getting post stroke therapy? You should be getting speech therapy as well as physiotherapy. Please get your Dr. or Neurologist to refer you to this specialty clinic after a stroke. Are you taking nerve pain meds like Lyrica or Neurontin? I know with those meds I had difficulty concentrating. I hope the can get your pain under control. Stay positive and wish you the best for your recovery. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Sorry that they don't seem to understand. It is very difficult express how one feels. Are the people whom you speak of involved with your medical care? Can you get someone to be an advocate for you to get more information, therapy and care? Sending healing thoughts your way.
    Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.
  • SavageSavage United StatesPosts: 5,427
    No...My kids don't get involved with my care.
    My body, besides the messed up back and that pain..also has different conditions that docs repeatedly say, "That's rare. I'm not experienced with that." So then specialists. Noone helps.
    Only PM doc has best handle on me. I'm sick of running around to fix anything. Pain control is my only goal now.
    Kids..adult children you know...were there about seven years ago..with my first heart attack..and disappeared since. The chronic non terminal stuff.. they..are busy. When I'm on death bed, they will probably come around, but the living now..it is tough.
    I do have one friend who understands as much as is possible. Sometimes I wish she would talk with my kids, but I'm not sure that is appropriate and/or would be received well.
    I'm 55 years old now...on disability 2 years now.
    So, I think I'm not the mom or grandma they had envisioned. But I can only be me. I still keep in touch...with or without reply from them. What choice do I have? It just is so emotionally painful.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Heya Savage. Maybe the best thing you can do is put your words in writing and give them a letter. You can even use some of the terms from the "letter to Normals" if it helps you explain your situation.
    I know that there are people who have asked my other half why I am on disability because I don't talk about or share my issues with people, and I really didn't even want them to know that I was disabled..but it was that or they might assume I was lazy. I no longer care what most people think, but our children are different.

    Quite frankly, if people are making comments like you mentioned..they are being pretty rude and don't really deserve an explanation. If you really feel obligated to them, just tell them that you and your Drs are working on your symptoms, but you would like/need their support and understanding, not their constant questioning, doubting or criticism, and that you don't even understand it yourself.
    I wish you the best Savage..keep your chin up!
  • SavageSavage United StatesPosts: 5,427
    for the encouraging words...and more realistic perspective. Stroke recovery taking longer than I expected.
    My impatience does start with myself and I would never be that way with someone else, so need to lighten up. Also, I hate the way I start to think I can read everyone else's mind or just "know" their motives. I need to lighten up on others.
    This site has been the best re' my reading and communicating with others and I realize I need to say same to myself.
    This depression thing can be like a dark monster that slowly grows until it fills my being. Thankfully I am on the upswing. I need to remember it will get better...but during the down time it's so dark and I'm so alone and combined with the pain, it's maddening.
    I feel bad for saying negative anything about my kids. They really are great..living life best they can and very respectful to me. What more do I want? I wish I could delete my complaints. But since they are out there I think the good, bad and the ugly of a situation..well maybe someone else can relate.
    This has been a much better "in the head thinking" day.Thank God and thanks to you guys!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I know exactly how you feel. Since I'm a bit younger (17) and used to go to the gym a lot I hear bullshit like:

    2. You're lazy and don't do anything like mow the lawn or move furniture etc..
    3. Haha you're not a cripple!
    4. When I'm on the bus and sitting then someone older than me is standing and some vigilante decides to tell me to get up so someone older than me can sit down. They can have a seat when it feels like a needles permanently stuck in their ass.
  • I just want to remind you that pain and depression go hand in hand. Pain medication also contributes to depression. Depression hit me really hard! Doctors contributed my depression to pain and medication. I had to work really closely with them to keep the depression under control. Now I am a complete fruitcake! =)) Lol....just kidding. Got to try and find humor in there somewhere or you will go crazy.
  • P.S. Do you want to be buddies? :))(
  • Hey, my son is 17 and suffered a weight lifting accident last year and we discovered he had congenital spinal stenosis. The comments you posted sound like what he hears. The worst is when the jocks call him a p***y. He found out who his real friends are and there arent very many. He had surgery a year ago. Anyway, he has found that he can swim on a team. He still overdoes it sometimes and it took a while to get healed enough for butterfly. He isn't the best on the team but it is something athletic he can do. I thought I would mention it as something you might be able to do. If you can swim at all you could pick up the strokes and give you a way to work out and compete. Good luck to you. PS I hope you are kinder to your mama than he is to me. It breaks my heart to watch what he has gone through but I get all the anger. Good luck to you. Peace.
  • I hope you're feeling better sharing with us how you're feeling and I think at this point you should be looking out for number one and getting rehab and improving your speech so you will be able to feel more positive and you're doing well at writing to get your point across and that may be one way to communicate with your family as you have done so well with us.

    It sounds like there's a lot of disbelief with the way your family and "friends" are saying things about you in a negative way and that can bring you down for sure. I hope you get the respect you deserveat this time as your speech may take longer to heal you may do well finding a Speech Therapist and find out about Stroke Recovery from the Heart and Stroke Foundation and your Cardiologist like Z06 mentioned

    I know my husband was very negative to me until I booked an appointment with my Pain Management Dr. that I can't just snap out of it and the body takes awhile to heal and I took him there just so he'll understand more of what I'm going through. I would hope your rehab will be including your family in your rehab so they can help you instead of pulling you down. You are special and unique and I know it must be so frustrating not to be able to verbally express yourself at the moment.

    I never had children and can't understand what's going on but require respect from my family members and not disbelief. I'm praying you get through this and I know it's hard having chronic pain on top of having a stroke and sorry to see you going through this but you will get through this.

    I'm glad to hear you're so positive with people and that's your strength to help you make it through. Thinking positive thoughts and healing and reconcilation for you and praying you will feel better. You're still early in your recovery but you're doing and coping well. >:D< We're here to support you. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • SavageSavage United StatesPosts: 5,427
    ..Charry...so thoughtful and encouraging!
    And thanks to all you guys..you truly are lifesavers!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I'm not sure about your spine issues and all. But if you recently suffered a stroke. I would be staying in close contact with your Cardiologist and following up.




    My mom had a stroke and ended up getting 2 stents put in. She was about 80 when it happened. Afterwards she complained of random pains and felt like she woke up in mid-stream like you describe. It was partly remnants from the surgery/hospital meds, the mix with her normal meds, and the shock her body took.
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