Finding My Purpose Through A Decade Of Pain

It has been a while since I have written. It seem that this new year has left me at a loss. I guess, I am not sure how to move forward. Does that make sense?

For almost a decade I have suffered from Chronic Neuropathic Pain. In that time, I have had 2 small children, run my own businesses and dealt with many family crisis. Now things seem calm. I haven’t worked; as financially I don’t HAVE to, it would be a lot easier if I could work. However, I am not sure even what I want to do. Even as I type this, I feel the pain starting to set in. Which means that I can’t commit to anyone full time as I have my bad days which an employer wouldn’t really appreciate. Besides all of that I am not sure what I could do.

It seems lately I don’t have the ability to concentrate or have any gumption. I was always filled with gumption, but it is a character trait now lacking. It is both physical and emotional energy.

Prior to the Fall of 2012, I was always reading, writing or creating. I filled my mind and time with various activities. Now I seem to be in a haze. I don’t care as much about ensuring I get my medication. I don’t seem to care as much about pain spirals. It is almost like I expect them now and enduring them is comfort. Does that sound weird or what?

I am too tired to go to another Dr. I am too spent to go to another clinic. I am too jaded to trust yet another treatment plan. Even though I am getting better; at least I look better and my pain seems to be more manageable; I feel so …… I don’t know…..exhausted.

Over the past few weeks I have been able to sleep. It is one of the things I have missed most through my pain. I think I am addicted to sleep. For the first time in years, I actually feel comfortable in a bed. I wake up and it isn’t pain. Then I will slide back and start vomiting and suffer extreme pain bouts and I feel like 2 steps forward and 1 step back. Maybe that is why I feel so exhausted by life, I am catching up on 9 years of sleep deprivation.

This weekend I had a dinner party for a few girlfriends. Everything seemed to go well, except I had nothing to contribute in conversation. I don’t have a job and my basic communication is with my Painie community. It is challenging to come up with interesting anecdotes when your whole life is within 4 walls.  I am awkward and I stumble on my words or I can’t remember threads of conversation. It is like the pain has entwined my basic brain synapses and has choked the interesting right out of me.

Reading books – one of my most favourite things to do – I am unable to do. It seems I lack the ability to concentrate long enough. Television is one of the few things that distracts me from the pain both physical and emotional.

Basic simple tasks of life, seem to be almost overwhelming. I start something and  lose focus and go in another direction. Energy is just sapped right out of me. I am not sure why my Mo-Jo is sagging.

I miss having my Mother-in-Laws’ cheerleading. She always made me feel worthwhile even though I am not sure why or how? She was my anchor always giving emotionally and not requiring much in return. I hope I made her feel that way during her illness. She is gone and there is nothing that can fill that void. Is it just that I am in mourning or is it time that I accept this is my life?

My children are cusping on adolescence and I know that there are some hormones going on, but I feel like I am losing them. It is normal for them to move away from me in some form, that is part of growing up, but I am not ready for it. Is that just part of the pain syndrome or is it normal? I want to be around them more, but they are now doing so many physical things I cannot do. I used to volunteer more at the school, but this year has been one filled with so much chaos that I have been unable to. I wish I could do so much more for them.

During the Fall (when my mother in law died) some family members made comments about my pain that stung me deeply. Two comments severely damaged my confidence the first “Always about your pain, it is always about your pain”  the next was “just suck it up, just suck it up”. In stressful times things get said that cannot get unsaid. Even though they didn’t mean those words to come out of their mouths, it is how they have felt about me the whole time. As many of you Painies know, when people don’t believe your pain it can hurt more than the pain itself. My response to those comments were; “I know you don’t understand my pain because you don’t see it. I don’t let you. I go into hibernation and stay away from people. But that doesn’t mean it isn’t real.” I thought these people would be somewhat empathetic, but I guess not. There are times when that final punch is a knock out. These comments hurt so much because it pulled me out of my little bubble of denial and made me see me as they do. They think that I am a liar or making it up. Even after all I have gone through, my pain to them, is not real. It makes me feel so alone; especially without my Mother-in-Law around to hold my hand.

My husband is there for me, but he has so much to deal with on his own. He is struggling so much with the loss of his mother, the chaos of his family and being with me. My uselessness is exacerbated by the fact that I do not know how to help him. Every cell of my being is being sucked up by just existing right now that I have nothing left over. I am sad  I cannot support him as much as he has supported me. I watch his pain and him having to pick up more of the responsibility because of my sporadic relapses. The comments previously mentioned have driven such a wedge between all of us, as he is very defensive of me and I am just not strong enough to engage at all. I wish that I could reach out and take all of his pain away.

It is like layer upon layer upon layer of stress is burying me with a heavy weight. I am not sure how to navigate my way through this, I just don’t know which way to go.

Is it just that I should accept my pain?  This will be my life. If so, then what type of life is it? I have always fought to make sure that things would be better. Now……I am not so sure. If you could call me a colour it wouldn’t be blue it would be grey. I am trying to find my footing, but not sure in which direction to take or how to proceed. I don’t want to accept that this is my life, but I am just so tired of everything. Depression is part of pain conditions and the mourning process, but there has to be something that will make me turn the corner. There are people with way worse illnesses than mine and situations than mine. I know  I am blessed in many ways; I have a roof over my head, food on the table, a wonderful husband, great kids. I just can’t shake the sadness. Any suggestions?


8 thoughts on “Finding My Purpose Through A Decade Of Pain

  1. My thoughts are with you. For now, I wanted to send gentle hugs; later I’ll write here more about accepting pain. It’s not a surrender, it’s a step on the road to victory. More later, for now (((((hugs))))).

  2. I have chronic pain, possibly from a different source, but it’s there. It is very overwhelming and it leaves my wife to do the lions share of everything. I have been able, to one degree or another, hide the depth of the pain from my employer, so I still have that, thankfully. But I can totally empathize with your feelings of just not wanting to seek further treatment.

    But, we have to. For our children, for our spouses. We have to dig down deep and find that extra strength to just keep on going. As sufferers of chronic pain, we have to take it upon ourselves to keep it inside us, never ignoring it, but also never submitting to it. As I type this, my arms burn with pain, but I continue. You are the same. You started this blog with a purpose. Find that purpose again and let it drive you. Even if the only result is a lasting log of painies conditions and what they’ve tried to manage that condition. People will come across this blog and find something that helps them.

    And that is NOTS useless. And neither are you. You are helping many just by having this place for people to come and read, share, learn.

    My heart goes out to you, I wish you the best. Be well and be strong.

    1. Thank you for your kind words and the kick in the butt I surely need. I find winter in Canada the worst time of year and having lost my Mother in Law was harder than anything. She was my biggest cheerleader and supporter. I don’t think I even realized how much so; until she was gone.

      I have revisited my Naturopath and have started doing my treatments again. The warmer weather will help with mobility and mood.

      I am sorry for your pain. It is a horrible thing to bear no matter what the source. I hope that you are having some success in treatments and are having a pain free day.

      Thank you again.

  3. You can own your chronic pain, and not have it own you. Pain can bring sadness; it’s part of a grieving process for the life you had or wanted to have is not going to either happen or be the same.
    You are stronger than you know/feel. I hope this summer has given you the time to relax.

  4. As I read your words, I feel so sad for you. It was a while after I was diagnosed with both neuropathy and fibromyalgia that I went through the various stages of grief for my old, better life. When I got to the acceptance part, it was that hardest stage. I decided that I would accept it but in reality, I went screaming and kicking the whole way.
    We all accept that we have to get older but we are never ready to accept any illness as part of that time. I was so looking forward to retirement so I could do all the stuff I never had time to do when I was working. That dream crashed and burned like a jet plane. No longer could I just pack and go. My life revolved around pills, doctors, and the pain.
    When I was at the doctors office for a check up last month, I had asked if there was any more she could do for the pain. She told me there was nothing else and she looked truly sad for me. I said to her, “I guess I just have to suffer? ” She didn’t say anything but I know she wished could help me.
    Life does go on. I don’t worry anymore about the housework getting done. It was difficult because I’m obsessive compulsive and I always had everything clean and orderly. Now I just spread the cleaning out through the week and just make sure everything is picked up so that it looks like I tried.
    The problem with invisible disabilities is that people cannot see your pain so they tend to not believe you. I have given up trying to get people to see my pain. Even my sister who says she has Parkinson ‘ s tends to down play my pain. I told her to get lost if she could not have any compassion for me but expected it for herself. I will take care of myself and will
    not put up with people who don’t care. That includes my husband, son, sisters and friends. They do not have to live my life.
    Sometimes we have to make a stand and decide how best to live our lives. You sound like a strong woman, I’m sure you can figure it all out.
    Best wishes and gentle hugs to you.

    1. Thank you, I agree the disbelief is the hardest part. I will be posting an article about that very soon. I am sorry that you have to go through all of that. I guess we just are not prepared for what life throws us, sometimes, no matter what it is.
      I empathize with the Dr. visit. It just sucks. Sometimes you just need someone to say. It just sucks right?
      Sending you best wishes too.

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