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My injury! My opinions!

I would like to start by apologising. A lot of this is just a rant. I am just frustrated and hurt and angry. I am the one with a bad back. I am the one going for a discectomy in a week but I feel like I have been forgotten in my family. Like while my injury matters I don't.

Everyone is so concerned with telling me what they think I should do and how they feel that they can't look past their own opinions and realise the one person who's opinions matter the most are mine.
I am the one in pain 24/7. I am the one who has to quit her job. I am the one facing spinal surgery. I am the one who has to come to terms with the fact that I will have a physical disability for the rest of my life (neurosurgeons diagnosis). I am the one who has to lie to her friends about coming back to work because I can't let my boss know I won't be yet. I have been in constant pain since July. I am the person that hasn't walked further than 800m since September. I can't drive. I can't fly (I am a pilot). I cannot even sit in a chair. I can't go out without being glared at by random strangers for having to lay on the ground every 500m.

I just need to unload, I don't even need to unload often, I have coped with it well, my GP and my Physio have both commented on how well I am coping. I guess I am pretty resilient, so I don't understand why it's so impossible to let me on the occasion I need to just let out my feelings and thoughts and stresses without interruption, with people just listening to what I want and feel and think. For my loved ones just to support me as I try to work out what to do for the rest of my life (I'm 29).

I have been ranted at by a number of people today, all telling me what to do re possible compensation from work due to my injury. I tried to talk to my partner about it tonight. I hadn't even gotten three sentences out before he is interrupting with his opinion when he does not even know what I am going to say. I told him I just need to talk, to offload and to get out what I'm thinking without being ranted at, without putting up with other people's anger. It didn't work. Then he had to say "why, don't I get an opinion?" when I say I am stressed and I just need to talk he tells me to calm down, then tells me how he is so stressed too.

Why is it so hard to think, maybe, considering it's Lozs back and Lozs life, Lozs opinions and feelings are probably the most important. Loz is going to be injured for life, Loz has to give up a lot of stuff she loves, maybe I should just take the time to listen to her and give her some unjudgemental support.

I do not mope around or complain all the time. I try my hardest to do everything I can working around the pain and mobility issues. I think my family think they are supporting me but really they are just supporting themselves. I just don't know what to do. I am terrified of needles, I have surgery in a week and all everyone does is rag on me and criticise.

Sigh. Thank you for your time, I am sorry for the pity party rant.

Loz
-Loz-
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Comments

  • SarahLindeauSarahLindeau Posts: 766
    edited 12/07/2014 - 3:38 AM
    What is your diagnosis? What levels are affected? I completely understand what it's like, having to give up certain parts of your life that make you happy, but I strongly believe in the power of positive thinking.

    I had terrible depression and anxiety when I was at my worst pain levels, but you have to try to be optimistic, because what are your other options? Giving up? Saying I'm done? Those aren't real options, in my opinion.

    Granted, I know nothing about your specific situation, but don't underestimate the power of optimism.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • ellozeelloz Posts: 22
    edited 12/07/2014 - 8:20 PM
    I don't have depression and I am not giving up regarding my injury. I need some support from my family. There is nothing wrong with needing support occasionally even if I am thinking positive. My feelings are the last ones be considered (read not considered at all) by my partner and by the rest of my immediate family when my opinions on what to do regarding the changes in my life are the most important. I don't think positive thinking is going to change their expectations that I be there to support them as they struggle to cope with MY injury.
    -Loz-
  • One more thing, you are the one who has to make the decisions and live with them, so you really dont need to have approval from anyone. Granted, it is always a plus to have moral and physical support from family, but it is not imperative. You do the best with the information, medical advice, and options available to you.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • SarahLindeauSarahLindeau Posts: 766
    edited 12/08/2014 - 10:36 AM
    You have a completely valid point. I am fortunate in that my husband and immediate family have been behind me. I know I would be at a loss without that support so my heart goes out to you. You have to be your loudest advocate and defender, especially if there's no one to help you be heard.

    And I wasn't inferring that you have depression; was only speaking of myself. I hope you don't feel I spoke out of place. This forum is a sounding board for a lot of people who have no other support and it is perfectly acceptable to vent.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • I think you'll be surprised. Give it time and patience and I wish you the best with your family. It's not easy. They often don't come immediately with the skills to deal with chronic pain.. Much like us it takes time . And some people are truly idiots. I've met both from my family and friends. I spend more time with those who get it and I'm social with the rest.
    I hope you fly again. I'm just looking to drive a car again.
  • I can't drive either. But I'd rather fly. I had my pilots license before my drivers license. I just have to hope next week's op allows me to sit down. And then that CASA will give me an aviation medical after back surgery.

    I get that I get to make decisions for me and I have been doing that but it would be nice just to be able to voice my ideas/ concerns/ feelings without then having to put up with whoever I am talking to going on a rant or telling me over and over what to do. It just helps to be able to speak your thoughts out loud to someone and instead of them making decisions just be there for you. Maybe ask you some questions to help order your thoughts. Does that make sense?

    Everyone around me who is suppose to be there to support me if I need. Which now I do are instead managing to make this all about them. Forgive me for being selfish but it is NOT about them. I don't understand how they can think it is okay to make it about them. And I have actually told them I need them to just provide me with some unjudgemental support occasionally, only occasionally. I Said it out loud. I need support while I go through surgery and stuff, I have a major surgery phobia, I'd rather get hit by a bus then go through what I am about to, it doesn't matter, it is still about them. I just have no support system. I have been there for all of them in the past and now I am still being there making them feel better when I am the one going through the injury.

    Edit: considering many people in my family work in hospitals as nurses and the like you would think they have a clue that it can be hard to be a patient.
    -Loz-
  • Although we're not in the same shoes with our ailments, I understand where you're coming from . My family is fairly supportive (emergency surgery vs. wheelchair wasn't a big decision), but I would give anything to have someone to unload on about my fears about the resolution (or lack of) the disease and all the implications that goes with it. I am also a professional, that I have no idea if my career as I know it will be over, or just different, or what. I tend to be an optimist, but I am also a realist.
    You are welcome to send me a PM if you just want to rant to get it off your chest. It is very scary having life altering surgery.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • Well I made it through surgery. Partner was a great support going into surgery which was surprising but immensely helpful when you are needle phobic like myself.

    Now however, I keep having to remind people, I HAD SPINAL SURGERY, THEY DRILLED A HOLE INTO MY SPINE. Still not being taken seriously, it's like everyone just expects me to be perfect again three days post surgery. I think they expect me to ignore my doctors orders of doing nothing for six weeks and go back to being a fully able body person straight away. Looking at my life a lot at the moment. Trying to decide what to do, do I want to continue on like this, surrounded by such unsupportive people. As I am sure you can probably figure, surgery is not the only thing for which I have received no support for. It's just like the straw that is breaking this camels back for me. On the upside surgery went well and I feel great.
    -Loz-
  • i identify so much. hope it is all working out. thanks for sharing :)

  • Hi there
    So happy your surgery went well . I am 42 and a yr ago I had a micro dysectomy on my l5s1. Every thing went well but I too was pressured to get right back to work and being mom. No one understood. A year later I ended up having to have spinal fusion ALIF. Much more severe operation. My advice to you is take your time, no one will get it but someone else with back pain. Take care of yourself because you'll end up like me. You matter don't force yourself to rush everday stuff. I wish you well.

    elloz said:
    Well I made it through surgery. Partner was a great support going into surgery which was surprising but immensely helpful when you are needle phobic like myself.

    Now however, I keep having to remind people, I HAD SPINAL SURGERY, THEY DRILLED A HOLE INTO MY SPINE. Still not being taken seriously, it's like everyone just expects me to be perfect again three days post surgery. I think they expect me to ignore my doctors orders of doing nothing for six weeks and go back to being a fully able body person straight away. Looking at my life a lot at the moment. Trying to decide what to do, do I want to continue on like this, surrounded by such unsupportive people. As I am sure you can probably figure, surgery is not the only thing for which I have received no support for. It's just like the straw that is breaking this camels back for me. On the upside surgery went well and I feel great.
  • how did it go? how are you?
  • Doug HellDoug Hell Posts: 332
    edited 03/25/2015 - 3:11 AM
    It isn't just you! We have to remember that there is always another person at the other end of that conversation. Though I certainly get where you are coming from Elloz, remember that we have to make ourselves aware of the fact that when you're dealing with people, you are dealing with emotions and also with the way that that person deals with those emotions. We absolutely must take a step out to have a look in, in order to manage those relationships because we aren't the ONLY ones suffering here.

    It never works when it's all about "me, me, me...." Often times, our conversations with our Spouse's consist of just that, forever leaving that empty void and potentially creating resentment, especially if you're angrily ranting 24/7..... A conversation is a two way street, so you should allow your partner to have a say and an opinion, even if you disagree with it. And remember to listen 3 times before you speak once. This is what talking it out is all about. You can't expect someone to simply sit there, not say a word, and agree with everything you say all the time. Sometimes you have to agree to disagree! I'm not trying to pick on you (again, I understand your pain), but your entire post consisted of just that; "me, me, me." You will never get the desired outcome approaching it in that manner. You must open up and see that they too are suffering as a direct result of the situation at hand. They are impacted as well. Realize that it isn't just you affected.

    People will always try to offer support the way they know how. Take it with a grain of salt and try to realize that the motive is simply to try and help, even if it is only frustrating you. They aren't going through it, so they really don't understand any of it and you can't expect them to have a clue! If you feel they aren't helping or if it makes matters worse for you, tell them that it isn't helping. Be honest and open. Communication is key in any relationship, especially when you have been thrown a curve ball in life. Without communication, there isn't much else.

    You didn't provide us with much medical info. Perhaps you will soon. In the meantime, try to cope. Find coping mechanisms that work for you. We all need an outlet. And even if you have to lay down every 500M (I did the same thing for months), do what you need to do and who cares what anyone thinks! An outlet is the best medicine when feeling down. Deflect and just do it. I understand that this was a rant. We all do it from time to time, but I encourage you to just try your best to incorporate some other techniques and listen a bit more, even though you're the one suffering the physical pain alone.

    Sending healing vibes your way...

    Doug Hell
    Spine-Health Moderator
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • OverItAllOOverItAll Posts: 88
    edited 03/25/2015 - 3:49 AM
    I'm so very sorry, this can feel so isolating sometimes. What kind of surgery did you have? Why does the doctor assume you will not fully recover?
  • Very good point Doug. I think we can all remember how to appreciate our families/spouses/caregivers
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • Listening is a skill. I try to remember that when the other person is talking I should be listening closely to every word. It's often too easy to take that time to think of a reply & not really hear what is being said. There are 2 sides to every story. If you want someone in your life you need to hear their words & consider their heart... Living with chronic pain makes it all too easy to focus on nothing more than ourselves & our pain, it's consuming.
    Osteoarthritis & DDD.
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