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My kids deserve more...

I have read so many posts in this Forum and can relate to almost all of them. I ache for all of you. I ache for myself. But my heart breaks for my children. I have 2 boys - 2 years and 4 years old. I feel like my pain has made me a bystander in their lives, but I long to be a full and active participant. Mostly, they play and I watch from my bed. My horrible bed, which feels more like my prison and my body is my personal jail cell. On a good day, we go out as a family, my husband brings a chair for me, so while my boys laugh, run, wrestle and play - at least I can be physically present, but still relegated to the sidelines. These days, my goals are simple: walk with my kids to the corner of our street for frozen yogurt, sit on the floor with them to do a puzzle, push them on a swing or spend as much time as I can cuddling them (our special place is hiding under the covers of my bed to tell secrets). Man, those are the best days! Then there are the bad days, most days. When i'm exhausted, depressed, feeling like I'm in a long dark tunnel with no light or end in sight. My medication makes me impatient and my pain makes me irritable. I yell at them because I don't have the wherewithal to do anything else. I cry because I want something to change but it never does. My husband has to keep them away from me because the slightest bounce on the bed is agony. It's a trip to the corner if they are too rough with me because we need to make them understand my fragility. Everyday my 4 year old asks if my "boo boo is better yet". He offers a kiss on my back and always reminds my husband to bring pillows for mommy to lean on. I try to smile. I fake it. I push myself beyond my limits. I lift him in my arms and we dance for what feels like a beautiful eternity until I realize it's only been a few minutes. That's the most I can handle. For every moment of exertion I spend double recovering. My husband picks up the slack - sometimes begrudgingly but mostly it's just our way of life. Then the guilt sets in. His guilt for being angry and resentful, mine for not being the partner, the lover, the mother he bargained for. But, we carry on and make it through to tomorrow just as we have since my back pain first started 15 years ago. Back then I was full of hopes and dreams for the future. I was magnetic, popular and full of promise. Now I'm tired, helpless and oftentimes, indifferent. I push those feelings away. I never dreamed that this would
be the wife and mother I would become. I don't want this to be how my children remember their childhood. I don't even recognize the person I've become. I feel like the "real" me is trapped in a broken body. My boys deserve more...better.
They don't know it, but I do. So, everyday I fight. I try to stay strong. I push myself to be more, to do more. I keep learning and reading about my situation. I reach out to people like you - who understand and don't judge. Everyday, I hold onto the hope that today might be one of the good days. I thanks my family and friends for supporting and sacrificing for me. Everyday I hug my children and tell them how much I love them. Everyday I live with chronic pain and vow that I won't let it win!


  • dilaurodilauro ConnecticutPosts: 9,875
    edited 08/22/2012 - 12:03 PM
    Marni said:

    Everyday I hug my children and tell them how much I love them. Everyday I live with chronic pain and vow that I won't let it win!
    Keep up the positive outlook and things do find ways of falling to place. There is always a reason why something happens.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • thanks for the encouragement! I hope my post can offer someone else some hope. Sometimes, I have to force myself to be positive, whether I truly feel that way or not. My boys are worth it and so am I! BTW - please ignore the PM I sent you. I guess I'm posting properly because you saw it and replied. Cheers
  • kamgramkkamgram Posts: 483
    edited 08/22/2012 - 6:50 PM
    Marni, your post brought me to tears, tears of sympathy and empathy and understanding. My back issues began when pregnant with my daughter in 1984 and I lived with occasional flair ups for the next 10 yrs. until 1994 when I had first lumbar surgery. My daughter was 10 and my son was almost 4. It was so difficult to watch my husband and my mom have to raise my children while I was healing. I lived the next 14 yrs with some flair ups and numerous ESIs but a pretty normal life. Then in 2008 I experienced the most horrible sciatic pain and had another lumbar surgery in Oct 2008 and then reherniated 3 weeks later and had repeat surgery Dec.15. So I could not do any holiday preparations, no cooking, no shopping, no fun parades...nothing. I also felt the trapped in my "jail-cell body" and even though my kids were grown it was just normal for them to see me like this and I HATED it. My grandson Kamden was born April 15, 2010, a day after my birthday, and he is the light of my life. Things did not work out with father and my daughter and grandbaby have lived with us since he came home from hospital. I was able to help care for him and spend all the time I wanted playing with him until Feb. of this yr. when I experienced new back pain in thoracic that was so much worse than lumbar pain. I suffered for months trying to figure out if I was having heart issues and taking pain meds since March when they found it was my back. I finally had microdiscectomy on May 24, 12 and since I have not been able to lift my grandson as he is way over my weight limit of 8 lbs....lol He also will crawl up on bed and lay with me to watch tv or read books and he knows he must be very still. He will pat my back and kiss it and say he is kissing Grammy's boo-boo. Oh, just typing this makes the tears start...grrrrr....I can totally relate to you and cant imagine having small children to care for. But I can tell you that my kids are none the worse for wear. Neither remembers any of the bad times I always think about but do remember the times I just spent with them listening to their problems and concerns and just loving them. So please just cut yourself some slack. You can't help what you are going through. It could very well have been your husband and you would have been there for him just the same. Please feel free to PM anytime as I am on here night and day. This forum had truly saved my sanity when I am awake at 3am and can get on here and vent. Sorry for the long post but just felt a true connection with you.

  • Hi Kelli, Thank you for your kind words and for sharing your story. It always helps to know that we are not alone no matter how isolated we feel. We are more alike then you think...my back pain started with DDD and herniated L5/S1 over 15 years ago and a failed AILF (but no one knew it was a failure). I suffered in agony for 3 more years until one amazing surgeon, my life-saver, decided the only way to know forsure what was going on was to go back in and look for himself (NB: all my radiology was normal). It turned out I had gross motion in the instrumentation and he performed a 2 stage corrective circumfrential fusion at that level. After that I was improved - never pain free - but I managed with meds and injections. I was completely off narcotics and though I had bad days, I could live a pretty active, normal life. I even climbed to the Base Camp of Mt. Everest (but I admit, that brought on some severe pain - but the emotional 'win' far outweighed the physical pain.) But, when I became pregnant with my first son in 2008 - everything changed. Getting pregnant so quickly afterwards with my second just exascerbated the situation. (My kids are 20 months apart). Since then, things have been pretty bleak. In the past, my problems were all associated with my FBS at the one level. Now, I have something going on -albeit mild to moderate - at every level from T10 all the way to my coccyx. BTW - the coccydynia is some of the most excruciating pain I've ever felt. Believe me, the pain I experience does not match the radiological findings. I try to do as much as I can with my kids, but often I just can't. I'm very lucky to have a wonderful, hands-on husband (though he travels a lot for work), and a great family and friends, but at the same time, I hate that they get to do all the things with my boys that I dream of doing. I hate that they always have to 'bail me out'. My docs have told me I'm not even allowed to lift my kids, which, at their ages, is completely unrealistic. I asked the doctors what I'm supposed to do when my husband is away, and one of my kids is sick, has a nightmore or the little one needs a diaper change in the middle of the night. Am I just to let him sit like that in his crib until someone comes in the morning?! That's ridiculous. So, I push myself - until I can't anymore. Then I ask for help. That's always been the hardest for me. I've always been so strong and independant. It's one of the things my husband and I fight about all the time. He gets angry that I will try to do it myself first, hurt myself, then ask for the help. He wishes I would be a 'better patient', but I guess it's not in my nature. If I could change anything (actual pain notwithstanding) - it would be the impatience and irritability that inevitably takes over. I don't want to get frusterated and yell at my kids - they're just little boys, most of the time doing normal, little boy things. I'm the one with the problem, and often they have to pay because I don't have the energy to be as patient as I should be. Most of my energy goes to dealing with the pain and just getting out of bed each day. Does that make sense? Did you feel that impatience? More often than the not the underlying anger is not even really about what they are doing, but rather how I am feeling. They shouldn't have to suffer for my pain - whether it's due to the lack of patience or the inability to get actively involved in their life. How do I fix that?
    Hugs back to you (to share with your grandson ;-)
  • kamgramkkamgram Posts: 483
    edited 08/23/2012 - 7:29 PM
    Oh Marni, I do understand exactly what you are saying. I am the most impatient patient ever...these are my husbands exact words) hahaha We just had a text fight today on this very subject. He texted what are you doing? I texted...washing dishes...he texted why? I texted cause they need to get done...duh... and he proceeded to tell me that I was not a good patient and needed to listen to doctor when he said to rest. I cant just sit all day knowing he is working and then expect him to come home to dirty kitchen...cant do it:) I can be so calm while at home by myself even though I am in pain but as soon as hubby gets home with grandson who we keep until daughter gets off an hour later I am on edge and every little thing they do makes me impatient and grouchy and I say things before I think. If you find a way to fix this impatience than please let me know the secret. It does break my heart to sit on the sidelines and watch life pass me by some days but am determined to jump...well maybe walk softly...back into life one day:)

    hugs, for your babies too:)
  • SugarplumsSSugarplums Posts: 77
    edited 08/25/2012 - 12:54 AM
    I haven't had a spine issue since my kids were young, but when my 2 oldest were about 5 and 6, I had breast cancer, followed by an undiagnosed genetic pancreas disorder that has had me very ill most of their lives. They are now in their 20's and hold a lot of resentment towards me for being in bed their "entire lives." If I could do it all over again, I would make more happy memories for them so that they remember the happy times more than my time in bed.

    Whatever you are capable of doing with the kids now, do it. And make it dramatic and colorful and take a lot of pictures of you with them as "proof" of their happy childhood, just in case they get to their teens and 20's and quickly forget the times you have/had. Even if it's just doing a puzzle on the floor, pics are what they will have to remember and the more colorful and happy smiles in the pics, the better.
  • charryccharry Posts: 5,657
    edited 08/24/2012 - 3:59 PM
    I'm not a Mother although wish I could've been but I hope you can get some more support at home from other family or friends or daycare? Mainly I grew up in a very abusive home but love my parents but my Grandmother raised me and she had MS and I slowly saw her deteriorate but by then I was in my teens but she was always there for me at home and we would play games Scrabble and cards and help me with math and essay work etc. and she is my role model. Just being there is important so do what you can and most of all be gentle with yourself. 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
  • Charry, Sugarplums and of course Kamgram - I can't tell you how much I appreciate your insight. It's so wonderful to have people who can understand what it really, truly means to live with chronic pain. Sugarplums, my heart goes out to you. I'm so sorry for what you have been through - medically and personally. Your post really helped me. After I logged off, I pulled out my scrapbooks and did a few new pages. When my first son was born, I started the book as a way to chronicle and celebrate his birth, milestones and our special memories. It's filled with pictures, memorobilia, poems, quotes, letters I've written to him and my personal thoughts, dreams and hopes for him. But life, and pain, got in the way and I never got passed his first birthday (he's now 4!). As for my little guy, I never even started his book :-( Now, I feel pumped and empowered to work on these again and hope that they will become treasured tokens of my love for my kids when they are grown. I wish there was a way that I could help you erase some of your hurt. Please know that you've inspired me. Kamgram and I have been talking about how much we push ourselves to do things beyond our limits. Everything I do is for my boys. I am really one of the lucky ones - I do have a lot of help at home between my hubby, my friends and my family - and we have a live-in nanny. She's great for doing the 'heavy-lifting', but I'm still very hands-on emotionally. Despite the impatience and irritability that Kelli and I struggle with, I have made sure to carve out 'special' things for just me and the boys - telling secrets under the covers, singing them to sleep everynight, playing the guitar for them, doing crafts, reading books, whatever. I'm never able to give them their bath (bending over the tub is just too much for me), but they always beg me to, so when I'm having a good day, we all pile into my bathtub (me in my bathing suit ;-), and we have a bubble bath together, complete with bubble fights, funny bubble hair and bubble beards. When I'm having a bad day, we have a 'picnic' on my bed. I didn't mean to list out things that I do, but writing some of these thing down helps me reassure myself that it's not all bad. There are good memories and special times for them to look back on. Thank you all again for sharing your experiences with me. It really does mean so much. Best, Marni
  • For some reason, this made me so sad....

    I've been having a very bad flare up and have been in bed for about 11 days straight (with the exception of one trip to the doc and one to the grocery store).

    Tonight, I ordered dinner for my kids and the meal came with 2 small bags of M&Ms for each of them. I promised them that after their dinner and baths, they could have the candy. My older son (4 years old) finished all his food, was first to have his bath, got into his PJs and came running into my room. (Big shock, I was still laying in bed, I couldn't even go down to the kitchen to eat dinner with them).

    The M&M's were on top of the highboy in my room. When my 2 year old was done as well, the older one went to get his little stool, climbed up and got the candy from the dresser for himself and his brother. Then he came to the side of my bed, showed me what he'd done and said "See mommy, I'm a good boy because I don't make you get up and walk around".

    On the one hand it was the sweetest thing ever, but on the other hand, it made me cry. Am I going crazy!?!?
  • kamgramkkamgram Posts: 483
    edited 08/27/2012 - 6:44 PM
    Honey, Im so sorry that this made you cry. I know kids at that age like being very independant. I will tell Kamden I will do something for him and he says," No Grammy, Kamden do it". He is so proud of himself when he can do it. Try to look at it like that. He is proud of himself and wants to be big brother so let him:) But on the other hand I totally understand what you are going through and everything always seems worse when you are having a bad pain day. Enjoy his independance cause when they become teenagers they are so flippin not independant...lol

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