Thursday, 23 April 2009

The Struggle Continues...

Honestly the past few days, or is it weeks now? I don't know anymore, the days all seem to blend together in a haze of pain and of me fighting, fighting, fighting to not let it drown me. The pain takes over every effort I try and make to pull myself above this illness and spend some sort of quality time with the people I love. I am so frightened and intimidated by 'the pain'. It sort of looms in front of me, I never know when it's going to hit, how hard it's going to hit, who will help me, who will have to see me writhing and sobbing and moaning in the absolute stronghold grip of 'the pain'. Did I miss one tablet somewhere along the line today, should I have done something different today, what if this, what if that, I question every single thing I do, I try and make sense of 'the pain', I try to prevent it, I try to understand it, it won't let me, it has a power so huge that it brings me to my knees and has me begging and pleading for it to leave me alone. It feels like a real thing attacking me, I hate it so much, I want to just rip it from my poor body and fling it as far as anything can be flung but it's so much bigger than me, it is huge, enormous, with an absolute hunger that can't be filled, it devours me. I cry as I try to describe this because I sound half mad talking about it this way as if it does indeed have a life force but honestly that's how it seems. I feel as though I have fought so damn hard, I take so much medicine and yet it still manages to find it's way into me and to hurt me so badly that I wish to take my own life. I don't really want to, of course, but the pain of it is so great that it seems the only thing I can do to stop it. I cannot live in that amount of pain, I just can't, it isn't humanly possible, I know, because if it were, I would do it, I know how strong I am but I know that 'the pain' is so much stronger that I don't stand a chance against it, not a chance. It is taking me from my boys, taking me from myself, I cannot focus on anything else anymore. It is bad enough that I have this illness and I must come to terms with the fact that it is not curable but I cannot even have the luxury of sorting out my thoughts and feelings and organizing things for my boys because of this horrific, all consuming pain. I would never have believed once that life could be so cruel. I feel as though I'm being punished. I know I'm not but it feels that way all the same. I cannot possibly be being punished because there are people in the world that have done far worse than I could ever possibly do and they are not suffering like this, so logically I know it doesn't work that way but emotionally it certainly feels as though I'm being punished. I may get a couple of days where 'the pain' is not all consuming but just as I start thinking that maybe I can do some things - back it comes with a vengeance and hurls me to the floor again and again and again, until I can't even get up. This time, I was asleep for maybe three hours and 'the pain' woke me. I knew I better get some breakthrough medicine fast because it could have been building for a few hours. I got the breakthrough alright but just the act of getting up and getting it sent me into so much agony that I was sobbing and shaking. I had to wake Jamie because I needed other medicines, I needed heat packs, I needed help and I couldn't do it myself because the pain absolutely crippled me. My poor son got up in the wee small hours, got my heat pillows, just did everything possible and had to watch me writhing, and I mean really actually writhing on the couch begging God to stop the pain, begging over and over again. I then got him to phone mum and then we got an ambulance to hospice and they got the pain under control but when I say they got it under control we don't actually know whether it just stopped or whether the breakthrough medicine finally kicked in, we just don't know. They don't know. Nobody knows.

I am pain free right now, I am at home from hospice, I have been taught to self inject with ketamine, deep into the subcutaneous layers, when I get into strife with the pain. I am still terrified that the pain will be bigger than the injection if it wants to be. There is no rhyme or reason at all as far as anyone of us can see.

I now wait for Jack to be dropped home and I will wipe away my tears, put a smile on my face, be grateful that right now the pain has left me alone and I can be here to greet my son and listen to the details of his day and feel the warmth and love emanating from him, it will do my soul good. I will say to myself, as I am doing right now, that I am thankful and grateful to be at home to greet him. To be able to listen to him and focus on him. I am so thankful that he is resilient. He always comes home smiling and full of life and energy and strength. I love that beautiful boy so very much, he is special, I have known from conception that he is special and I always had a knowing in the far reaches of myself that there would be a high price for having such a special child. Funny, I was afraid I'd lose him. That he would die of an awful illness. I never would have imagined that there could be something worse than that but there is. The something worse is me dying, him losing me. I still lose him too but he has to get hurt! So very hurt, which in turn hurts me more than anything else could, more than if it were him dying. If he were dying, I would know that eventually he'd be at peace and I would be left suffering and missing him. This way I know that he is left suffering and missing me and I hate that so, so much that I can't even put it into words. It is wrong, it feels evil that this should happen to a mother and child and yet I know it does and indeed it will and is happening. He is going to be hurt by this more than anything else could hurt him and I can't stop it, I can't protect him from it - How can life be so cruel. How can this be happening and how can I stand up under the weight of it?

I am sorry if this post is raw and messy I am just pouring out my heart and letting it be on the page as it is without editing, just my feelings and my pain, both physical and emotional. I don't know if it helps anyone anymore but perhaps it will one day, perhaps it helps people in ways that I can't even imagine, all I know is I am driven to share this story that is my life. I don't want, or need pity, I just feel a need to share and talk and reach out and have a voice that is heard, I don't fully understand it myself but I know that this blog is so very special to me. I am going to finish here for now but will be continuing on very soon as I want to talk to you about what the future may hold for dealing with the pain.


  1. Oh Jen - I am so angry too. I see so many wonderful people suffering and I don't understand the "why". I have faith but I still don't understand. I'm so sorry that you must go through this physical pain. I'm glad that you had a moment of pain-free to be with your son. I'm praying that they find a way to end the pain for you or at least make it bearable.

  2. Sending you lots of love...

  3. Dear, dear Jen, Keep trucking honey, keep trucking. Much love from England xxx

  4. Oh Jen, sweet, wonderful, strong woman that you are. I am thinking of you and sending love...

  5. Hello Jen. I have been following your story ... have never written before. But I want you to know that I wish I, and each of your online friends, could each take just a smidgen of your pain from you to lighten its burden on you. If only we could each take just a little then it wouldn't hurt us too badly but it would give you great relief. I wish I had answers. I don't. But what I do have I give to you -- faith and earnest prayer that God would intervene. He doesn't always do it, I don't know why. But then again, sometimes He does. And that's all I need to know to pray for you, so pray for you I will.

  6. Oh my. I have no words. Thinking of you and just wishing with all my heart that things were different for you.

  7. Oh Jen, I am so sorry that you are dealing with that dreadful pain. I wish they could find something to ease it for you.
    I'm praying for you!

    Hugs & Love,

  8. I'd be angry too, Jen, it isn't fair at all. I wish I could take the pain away.

    You wrote that you don't know if this (writing) is helping anyone, but I think just the love, concern and hope that I find in your writing and the comments is just inspirational. That we are able to be with one another in this way, well, I wouldn't have thought is possible 10 years ago that all these people from all different backgrounds, experiences and places would be on this journey. You and your story has proven that we are truly capable of caring for each other.

    New England

  9. Even through your painful, emotional and raw post, I feel courage and strength. You are an amazing mother. Stay strong. Sending love from New York City.

  10. Oh Jen. I'm just heartbroken by the pain you are going through but know that you are surrounded by love. You are so amazing and although this pain is terrible and this illness cruel beyond belief, you have so much love to give. We are all here to accept your story and your pain and to share it with you.

  11. Sending you all my love and prayers.

    Love Leeanne xxxx

  12. Sweet Jen, you have brought me to tears. Hush my friend...breathe my friend, relax my friend... Life is so cruel sometimes. May God grace you with peace and healing. You are in my prayers dear. Sending you a warm embrace.

  13. I am glad you are messy and raw and drippy and honest here. That's what this place is for. That's why we come and check on you. And encourage you and pray for you and love you - even from far away. I hope that someday you will understand that you don't need to apologize or explain or ask for our forbearance when you pour your heart out. Thank you for trusting us enough to be real with us.

    May you find rest and peace and relief very, very soon.

  14. Jeni,
    Get angry and cry your heart out! I find it's terribly unfair for Jack to have to miss out on a lifetime with his mother. I can't understand and will never understand while I live on this earth.

    God's plan is much bigger than you or I though. Sometimes he uses people to get to other people that might not have come to Him otherwise. I know THAT sounds terribly unfair too. But what if it meant Jack or someone else you know came to trust in Jesus and received everlasting life because of your situation? I don't know WHAT God has in mind. You just NEVER know what the outcome will be from your pain, horrible suffering and trials. I can tell you, your struggle will not be in vain. Something GREAT is going to result from this madness and unfairness. You will be rewarded sweet Jen.

    Keep your chin up, your pain in check and your faith in the One and Only God of the Universe, Jen. He hears your cries. Put your trust and faith in The One, The Great I Am, Jehovah who can give you peace in the loneliness, pain and heartbreak the world has to offer. He will reward your faith and trust and give you everlasting life. Jesus said in John 6:35, "I am the bread of life. He who comes to Me shall never hunger, and he who believes in Me shall never thirst."

    Love you, Jen. Praying for hope, peace, strength and rest in your darkest hour. You're going to finish this race strong in Christ!

  15. oh Jen, you're absolutely right, it's tragically, horribly unfair. My heart breaks for you and your sweet little Jack.

    And just so you know, you don't sound mad at all - I think you describe your pain perfectly. I remember thinking the pain of labour - which probably doesn't compare at all - had a force and identity all of it's own - I remember hating it and wishing that I could toss it away - or run away myself and escape.

    I can't imagine being in such constant pain and having to look after a child - and the 'why' of it all, of all your suffering, is completely unfathomable.

    I just hope you get lots and lots and lots of blissful pain-free days from now on.


  16. sending you a heart full of love.

  17. Jenny luv, I'm so sorry. No answers here, just some prayer and some love.


  18. As long as it continues to help you in even the tiniest of ways, keep pouring your heart out here, and we will keep loving and praying for you!

  19. Dear Jen, I hope that in coming here, I bring more than sympathy, that I bring some willingness to witness what it is you need to say. I think I recognise that it's important for you to do what you are doing here, and you are right - what you offer does help in many ways. I've come to realise that I'm more ready to die if I have to because my son is now grown - though I love life and want to live on. Your openness is a rare thing, and a gift to those of us who have encountered you, and I thank you, and I hold you in my prayers, and mostly, I pray for your pain to be relieved. Bless you.

  20. Jen,

    Thinking of you Jen and wishing the pain would stop...I wish I could take some of it for you.

    You are never far from my thoughts...


  21. Your writing inspires all of us here. There truly is no justice or sense in this.

    Sending up a little prayer for you right now.

  22. Dearest Jenni-
    Thanks for your honesty and your willingness to share yourself so beautifully as always. I hate that this is happening and can't imagine any plan that requires this but also know in my heart of hearts that all will be well in some place, some moment some time. Sending love to you and Jack and Jamie my friend.
    You are in my heart dear sister and I see you. Love you so much--xoxo

  23. Dearest Jenni,
    This blog is so special because it shares who you are. There are no pretenses, no trying to 'pretty your world up" and make it seem something it is not. You have shared your good days and bad, your ups and downs and you don't hold back. What beauty to be able to express yourself so real and so raw.
    I appreciate you sharing your journey...there is purpose in it and I know how to pray for you because you share so specifically.
    Hoping you pain free days of smiling with and sharing life with your boys.

    Ruthie from California

  24. I am still right here with you Jen ~ praying for you, thinking of you and sending much love and big hugs XXXXXXXXX

  25. I wish i could say words that would take your pain away. I really do. Instead I will pray that God makes this time easy for you. You are being thought of v. much.