Interlude

I Can't Sleep!!

I know I said I would try to remain positive in this space, but I am just all out of positivity at this time. I also promised that my next post would bring my readers to where I am in my recovery now, but I am not in the mood to tell the rest of the story, so this is an interlude.

These last few days have been tough. It is  not that the pain has increased or tha I am going backwards in my recovery, I am just fed up. I am going on a full two weeks without a solid nights sleep. I think I have mentioned before that one of the hardest aspects of this whole thing has been my inability to sleep for prolonged periods. No matter how tired I am, at most I only sleep for two and a half hours at a time. I might sleep for five or six hours throughout the night, but the time in between my snippets of sleep are some of the worst hours in my day.

Why is it that everything seems worse in the dark hours of the night? Everything feels horrible during those hours when all I want to do is sleep but sleep eludes me. These are the hours when I silently curse all those sound sleepers, wallow in my own self-pity and feel hopeless. It is during this time that I am haunted with why-me’s and what-if’s. Why did this happen to me, why can’t I sleep and what if it never gets better? It is also during this time that I feel the most guilty. I look over at the wonderful man sleeping soundly beside me and wonder why he puts up with it. This is also when I turn into a horrible person because I also wonder why he gets to sleep. Am I so selfish that I don’t want others to have what I cannot?  No… Not really, I am just green in the face with envy. Every night I go through this horrible routine… The world is quiet and you know no one is up and about, there is no traffic noises, even the cats are sleeping… But I am not.

These restless nights lead me to restless days. I wake up annoyed every morning but I can’t put my finger on what is upsetting me. I just don’t want to go through another day doing nothing. I have lost any sense of accomplishment, I have stopped making goals, stopped wanting to try. It scares me, especially in the dark hours of night. There are so many areas of my life where I feel not good enough, like no matter how hard I try I am not going to perform well enough to meet anyones expectations. What do they expect from me?

One thing I know is expected of me is to tell people I am getting better, or that my surgery as a huge success, but spinal fusions don’t work that way. Whereas you can normally recover from routine surgery in six to eight weeks, it takes up to two years for my spine to solidify. Two Years! I will be 27 before I am through with this recovery… Three years away from 30 and I still won’t have accomplished much. But what can I do from my bed? I started this blog in the hope that my words might help someone, and I still hope they do, but this blog is, in part, just for me. Hopefully it does help someone,  and hopefully the first person it helps is me but I guess only time will tell…

My sister bought a house yesterday and she just got married in January to an amazing man. I am so incredibly happy for her, but I am so undefinably sad for myself. My sister is three years older than me, so I am fairly used to the fact that she gets to do everything first but right now it goes beyond just my sister. I mentioned my best friend, known here are as Pixie, in my last post so I won’t go over it again. Suffice to say that I am having a really hard time watching everyone pull their lives together when ours feels like it is continuously in danger of falling apart.

I have learned to pull on a public facade. I am really good at saying I am fine and I am sure it will be all over soon, when inside I have had panic attacks and  am shaking with anxiety, pain and fear. I have discovered that most people don’t want to hear the truth about how I am feeling. Instead they wanted to feel good about themselves for asking even though it was an empty gesture. I don’t blame them, I really don’t. I just don’t know how to tell the truth without brushing them off. I have become really bad at being sociable. I feel like I have to apologize for not being able to go to other people’s houses, or out for coffee, shopping or a drink. I feel like I should say sorry when people do come to see me and all I do is lie in bed… But I can’t do anything else. I can’t get on a bus and travel, I can’t walk that far, hell I can’t even sit for very long.

In some convoluted and sick way I feel like this is all my fault. After all, it is my body that failed, me who couldn’t get better with physio, me who couldn’t handle the pain and, finally, it is me that has not been able to stay positive. I feel so guilty about that. There are people out there dealing with heavier, worse and more life changing problems than I am and they can live with positive attitudes, but I can’t even stay positive in my blog. Blah!

Anyways, since I wasn’t positive in this entry, I will leave off on a positive note: All these people have had a worse day than me!

*I had a YouTube Fail video here, but upon further reflection I decided that it is not positive to watch  another’s misfortunes. Maybe I am a horrible person, but sometimes it helps to see that there are people who have had a worse day than me. (I should say, I can only apply that to the vids where people were being stupid. After all, why would you try to ride your bike off a roof and into a pool anyway??) Soo… I decided to replace that vid with one that everyone has to find appealing… Super Kittens!*


Click Here for Chapter 4

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24 Comments to “Interlude”

  1. I found this blog while searching for information about insomnia after spinal fusion surgery. Wow, can I relate to you, even though I am 60 years old! I had some back issues but the summer of 2013 was terrific until August 6. I had that same pain you described, but a few weeks later I noticed that my entire upper torso had shifted to the left and that my right hip was sticking out and up. My belly button was pulled to the right. Like you, I was told by the doctors to try everything so I did for about a year. I did physical therapy, hands on therapy, acupuncuture, Botox, nerve blocks, epidurals, platelet rich plasma, myofascial release and two different chiropractors. I was in constant pain and no doctor prescribed anything beyond Tylenol with codeine #3. So on October 14, 2014 I had spinal fusion and spinal stenosis surgery. My scar is about 12 inches long. I feel pretty okay during the day but the nights are not pleasant. I think my nerve pain is under control due to the 2700 mgs of neurontonin I take during the day. But I can’t sleep! Then the nerve pain in my left foot starts. I am using an external bone growth stimulator so when I toss and turn something gets dislodged and then beeps. I end up on the couch watching tv since I hate disturbing my husband. Does anyone have any tips about sleeping? I’m going to try the walking around thing one poster suggested. I hope you all are doing better. Thanks for any help.

    • Hi Maria, I found with sleep there is no remedy. Get it when you can and as often as you can. My best sleep hours are 9am and 2pm. It means I have no days and when I have appointments it sucks but at least I can get five hours a day. Have you talked to your doctor about sleep meds? After my first surgery I used them to sleep after a e day stint of nothing but naps. They do work but you have to be able to relax. Has anyone taught you any visualisation or relaxation techniques? It sound hokey but if you can relax while the meds take effect you slip off. However, they make you pretty loopy if you miss your sleep window. I am so sorry I don’t have anything further to offer. Sleep still alludes me four years later.
      I hope your okay, and feel free to email me anytime… Gettingtheremyway @hotmail.com.
      In wish you the best.

      • My doctor suggested a banana a day for the potassium as well as walking around the house for an hour before bedtime to warm up the leg muscles in addition to drinking lots of water throught the day. I drink a cup of camomile tea every night before bed. I am taking 900 mgs of gabapentin 3x a day for nerve pain.

      • Bananas are my favourite! I find that walking helps with stiffness if not the pain. Blah… I am on lyrica for nerve pain, just working up my dose now. I was on it before my first surgery but went off when it let up. After the third surgery its decided to come back with vengeance. It burns my belly so bad!! Good luck with your back. Feel free to contact me here anytime. I am going to check my blog more regularly now.
        Best,
        – S.

  2. I love the comment about empty gestures from people asking if you’re okay. I get people eye rolling at me which I used to ignore now I ask them why ask if you’re going to roll your eyes lol. I too feel like we have no friends or social life as people are out and about doing ‘stuff’ and my husband wants to do ‘stuff’ too but I’m concerned over seating, travelling, his long will we be out, will there be somewhere for me yo lie down blah blah. I even pulled myself off fb as my posts were either criticised or if I heard one person say oh it will be better soon I might throw my laptop at their head. Now I’m back on fb thinking stuff it.
    Here I am just over 3 months post op wondering why was I comfortable for 3 months now in bloody agony arghhhhhhh. Keep up with the blog we can rant at each other x

  3. Hi! I just wanted to tell you that your blog is helping people. 🙂 my mom will be having spinal fusion surgery in a few weeks and I wanted to see what other people have experienced so that I can know how to help her. Thank you for your honesty with your feelings and your pain. I appreciate your authenticity & now have a better understanding of what she will be facing. I haven’t finished reading all of your posts but hope that you are feeling well.

    • Hi Shari,
      Thanks so much for your comment. I have been meaning to write an update about the latest spinal fusion in Sept. 2012 but haven’t gotten my fingers to the keys yet. If there is ever anything I can do to help, or you are looking for advice on positioning, modified movement ect please don’t hesitate to ask.
      Give your best to your mom and let her know she is not alone.
      Best,
      -S.

  4. I Stumbled upon this, once again researching my spinal fusion. I have had 3 back surgeries in the last yr. Yesterday it was 3 months from the last. My entire spine is fused and screwed and caged and I feel like my life is over at 59. My doctor has me on the butran patch and 10mg of percocet 3xday. What a joke after 15 months I finally got my handicap sticker. I understand what you are going through and I do feel you pain in your head and body. I’ll be keeping track of you, God bless and I pray you find your peace and I do too.

    • Hi there,
      I am very sorry I have taken a ridiculously long time to reply. To be honest, I didn’t know I had messages here.
      Don’t think your life is over. It is different, and you must take time to mourn the passing of your old life, but you can create a new and better existance for yourself. I don’t know how, I am still working on that part. I am currently – after my second fusion in Sept. 2012 – still recovering. I start back at physio soon and hopefully with better results than the last time.
      I understand what you are going through, too. If you want to, or need to, talk please feel free to contact me anytime at gettingtheremyway@hotmail.com
      Loads of love and positive vibes sent your way!
      – S.

      • That’s a great response mourn your old life as you have a new one now. That is so true. I stick little notes around my house if why I should be grateful. It works a treat. It may be something trivial to someone else butto you it means something. One of mine is that my illness has took me down a path of healthy Paleo eating and my skin is glowing, in fact my skin is in the best shape ever 🙂 x

  5. I wake up annoyed every morning but I can’t put my finger on what is upsetting me. I just don’t want to go through another day doing nothing. I have lost any sense of accomplishment, I have stopped making goals, stopped wanting to try. It scares me, especially in the dark hours of night. There are so many areas of my life where I feel not good enough, like no matter how hard I try I am not going to perform well enough to meet anyones expectations. What do they expect from me?

    I am so feeling you on this right now. So many expectations from every side. Really, what do they want from me??? I’m only one person, and a human being at that!
    So it all leads to the sleepless, restless nights and long grumpy days. I dont know how much of it I can take any more. That’s why I wrote this post.

    anyways thanks for dropping by my blog S. Looking forward to reading more from you.

    Mimi

    • Hi Mimi,
      Thanks for dropping by! I think that feeling unacomplished is somewhat a malaise of our times. That is not to say that we cannot get to a place where we feel ‘successful’, but that successful is so individualized, yet so common place, that we are struggling to feel accomplished within ourselves while simutaneously we are trying to living up to what our peers and society see as successful… Sometimes those two things are radically different. I don’t know if this made sense… Thanks for making me think a little deeper.
      I look forward to reading more of your posts… In fact I am reading through some of your older posts now.
      I hope all is well!
      Best,
      -S.

  6. While I have never had to deal with what you are going through, I can relate to the frustration of feeling like you should be doing more with your life than what you are doing.
    There’s a line from a song by Sara Bareilles called “Uncharted,” and it has a line I try to remember when I feel like I should be farther along in my career or with my accomplishments: “Compare where you are to where you want to be and you’ll get nowhere.”
    We all have to take our own path to achieve our goals.
    Hope you get some relief soon…

    • Hi Carla,
      What a great quote. I think that may be what I am trying to do. This post was really a rant. I have been trying to find my path, the one that will bring me to where I want to be. It is just taking longer than I ever thought it would. And I am having troubles setting my feet in the right direction! Haha, I am sure I will find my way… eventually.
      I will check out the song, too!
      Thanks for your comment, I really appreciate you sharing your wisdom with me.
      -S.

  7. Good luck with the recovery, it probably isn’t fun, but you’ll get there! Great writing!

    • Hi PL,
      Thanks for the comments and encouragment. You are right, it is not fun but I really have no choice other than to get there. Life goes on. I look forward to checking out your blog!
      -S.

  8. Well done you for pouring it all out. That’s what it’s all about.

    As to the sleeping – please get help! Your body needs all the help it can and sleep is so important. Have you tried hypnosis?

    Rooting for you

    • Hi Caroline,
      Thanks again! I haven’t tried hypnosis… I don’t know if I would be able to tolerate the appointments yet. I am going to go talk to my doctor. However she is 45 min away and with a bummed back the last thing you want to do is drive that far. I have an appointment with the surgein on May 17 so I will mention it there if I am still struggling.
      Did I mention that I am inspired by your name change? It takes alot of courage to take that step! Kudos!
      I am rooting for you as well!
      😀
      -S.

  9. Hey S, I love your blog! You are very honest about what you are feeling and that is something I really enjoy reading. I can definitely relate about the sleeping issues – its the worst feeling. If I wake up, I make sure to get up, walk around for a minute or get a drink and then go back to sleep. This breaks the monotony for me and seems to convince my brain that walking or getting a drink was the reason I awoke…. meaning I get back to sleep sooner. Not sure how well you would be able to do this with your back, but thats how I get around it sometimes.
    Keep up the writing, I’ll definitely be returning,
    Jess.

    • Hello Jess,
      Thanks for your generous comments on my writing!! I appreciate the adivce on sleeping, it is the worst feeling. I try to get up and walk around as well, but in my case I usually have to wait for the pain meds to kick in before I can be comfortable again.
      This post was really the result of me just being fed up. Sometimes everyone needs a good rant.
      I hope to see you here again soon! (and you already know I am totally a fan of your blog! 😛 )
      xo -S.

  10. Morning Miss Super S, you need to read my last post. Sometimes real strength is about showing our vulnerability. We need to allow ourselves to not feel guilty give ourselves the permission to fall apart.
    You know how sometimes after a good cry, you feel so much better. I guess that is why writing how you are feeling in your blog is a great avenue to let go. Get all that emotion out on paper, a space to rant without judgement.
    Life has a habit of taking us down many paths and I do believe you will look back on this time in your life and reflect on how much strength it has given you.

    S

    • Hello S,
      I just read your last post and you do speak to my issues. I know I need to allow myself to go through this at my own emotional pace. I am handling alot and I should allow myself to breakdown, I just feel like if I let it go, I may not regain control. If I fall apart now, I don’t know if I know myself well enough to put the pieces back together. I might end up being this grotesque mixed up puzzle where you force the pieces to fit because you don’t have the patience to put it back together properly.
      I have good cries regularly. Haha, I say that like it is a positive thing, and in one sense it is. It gets all the negative emotions out, and usually I feel better. Then there are the days that the crying just makes me feel like a failure and leaved me feeling more drained than I thought possible.

      You are right about looking back and seeing things as positive character building experiences rather than horrible dark injury times… I will look back someday and say ‘Wow! Look at how far I have come!’ but have you ever noticed that the journey to a place takes sooo much longer than the trip back? I feel like I am inching along my life path, while everyone around me is sprinting to the finish line. Enough with these crazy metaphors. I appreciate that you have reinforced my idea that my blog should be for me, and my place to rant without judgement.
      Thanks for all your support and kind words. I have found a measure of comfort here I really wasn’t expecting.
      Keep on writing, I look forward to your next post!
      Best,
      ox -S.

  11. Hi, S. First of all, I couldn’t even come close to watching that whole video. Too painful. And depressing.

    I’m in the process of trying to read all your posts so I can understand what you’re going through. You have a heavy burden. And you’re so young. In youth, we don’t have a lot of patience. I won’t pretend to know your pain. But I will tell you with some confidence that your age will work in your favor in terms of healing.

    I do understand all too well the inability to sleep. I went for days without sleeping when my ex-husband first left me. I finally talked with my doctor about it. He was very straight forward. He said, “You HAVE to sleep. It will negatively affect all aspects of your well being if you don’t. That means physical and mental.” He was not an alarmist so I took him seriously. He gave me three or four options. There are a number of temporary solutions. Please talk to your doctor about this. I believe it is essential to your healing.

    There’s no wonder you feel the way you do. And by the way, your writing is for you first. Write exactly what you feel like writing. I’m pulling for you big time.

    • Hello,
      Thank you for your comments. Sorry about the video… I agree with you and replaced it with Super Kittens!
      My recovery has been pretty routine, I had an infection early on, but it cleared up with antibiotics. You are right that my age will help in the recovery, and I am doing fine. I am just impatient. I have had this injury for over a year, and had my sugery eight weeks ago. I shouldn’t expect to I be better yet, I just want to be.
      Thanks for your advice on sleeping…
      I know I have to sleep. I am going to go see my family doctor as soon as I can handle the 45 min trip or I will bring it up with my surgeon on May 17 when I see him again. But the real problem is my pain, I don’t sleep because I am not comfortable. My pain meds last about three hours after they kick in, but I have to wait until they kick in to sleep and then I wake up when I need more and have to wait for them to kick in again. I could increase my pain meds but I also don’t want to because I already feel like a pill head and would really like to start working off of them soon.
      Anyways, Thank you so much. I appreciated your input. I guess this post was more of a rant than anything. I know I just have to be patient and wait, it is just frustrating and hard sometimes.

      Take care, and I hope all is well.
      S.

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