Shining a Light on Living with Chronic Pain

Unrelenting levels of pain, excruciating pain, day in day out is isolating, exhausting. It’s so hard to describe to others who have not experienced this kind of life altering agony.

I know there are so many people who suffer enormous pain each and every day, who perhaps can’t find their voice to explain it or to describe the impact on their lives. This is my attempt at being their voice.

Surgeon’s Warning

My Surgeon warned me that my non union femur would continue to become more painful the longer it stayed broken. Every surgery to try to encourage healing has failed due to my rare bone disease working against the healing process. It’s now caused bone to grow in my muscles and I have constant muscle bleeds into my femur.

It’s been 5 years with no significant healing. My Surgeon has tried every possible surgical intervention to encourage healing. All have failed. The first attempt at bone grafting just saw my bone disease dissolve the graft. My Medical team couldn’t believe it.

20190808_205834My latest non union femur x-ray 

My bone disease is now attacking my spine. I have severe spinal stenosis with spinal cord compression at L3/L4, L4/L5, L5/S1 and degeneration and sclerosis of the spine  from C2 to S1. It’s a mess, despite 2 spinal surgical interventions.

My feet continue to constantly fracture along with hairline stress fractures in my pelvis, collar bone and ribs. The pain from all off this combined is unbelievable.

How Can You Be Cheerful?

I am often asked how do I manage my pain? How do I sound so cheerful? Of course there is always the comment, “You don’t look sick, no one would ever know”

Hmmmm…. I think maybe they would know if they could see me in the privacy of my home! It’s not until the afternoon I resemble anything that would be considered “normal”.

So how am I managing my pain at the moment? Truthfully, not very well. It is the worst it’s ever been as the non union femur and spinal stenosis keep me at extreme levels of pain.

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A Peek Through My Window

I thought I’d share a look through my window, into my average day in the hope that others, battling chronic pain and disease, may feel less alone:

  1. Wake up around 6.30am, from a generally broken nights sleep;
  2. Take pills before I try to get out of bed.
    Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti inflammatories help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
  3. I eventually make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
  4. I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
  5. I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain. The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
  6. I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
  7. In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
  8. I get told others should do those tasks for me but it is so important for my well being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
  9. I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
  10. After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, reading, watching TV, blogging, writing articles and administrating the online forums I love and manage.
  11. In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.20190812_115848
  12. I sit in the lounge room for dinner while we watch the news. I take  my evening pills,  shower  and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
  13. I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.

All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.

( I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).

I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.

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The Importance of Staying Positive

It can all feel relentless and never ending for anyone in severe pain. I still believe staying as positive as possible is so important to managing it, rather than it completely managing you.

It’s not easy, even for a long time Pollyanna, so don’t be discouraged if there are days when the tears just flow. Tomorrow is a new day. I love that about every morning.

The LORD’S loving kindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness. The LORD is my portion,” says my soul, “Therefore I have hope in Him.”… Lamentations 3 v 23

Some Simple Coping Tips

My few very simple tips to help cope on some level, with the unrelenting daily grind of disabling pain are:

  1. Set goals that you can achieve. It’s so important. For me it can be as simple as writing a blog article in the day, dusting one room in my home or doing my fortnightly online food shopping. All of these things may sound so mundane and no brainers but for someone dealing with debilitating pain and resulting disability, they are like climbing mountains.
  2. Celebrate the achievement of those goals. That might be making your favourite hot drink, watching a favourite TV show, chatting with a friend if you have the energy. Having a cheeky chocolate. Whatever reward works, take it. A goal achieved feels good!
  3. Ask for help when you really can’t cope. I receive care support for Podiatry, Physiotherapy, Occupational Therapy. I am comfortable accepting this help because I really need it and so does my husband. I am also only asking for help in areas that I simply can’t help myself. I’m  making sure I still keep tasks that I can do. It’s so important for my well being to retain as much independence as possible.
  4. Take time to be quiet, prayerful and listen to music. It feeds my soul and really helps to soothe my pain.

My pain journey is far from over. This broken leg and spine, and bone disease in general, is far from ceasing to cause me issues.

Writing gives me an avenue to express my joy and my pain through my health journey. It is healing and comforting for me but I also hope it helps others in pain to know they are not alone.

For those who read this, who don’t suffer excruciating pain, my hope and prayer is that it may help you understand the impact it has on others, who are trying to explain what living with pain is like.

My pain may be my constant companion but I’ll keep on fighting it and hoping that each morning when I open my eyes, it might just be a better day than the day before.

Sam x

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

 

If you would like to read a little more about my journey, here’s the link to My Story

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WEGO Health Award 2018 Nominee

 

 

18 thoughts on “Shining a Light on Living with Chronic Pain

  1. Thanks Sam, this is so good. At first I think I have nothing to complain about, I know a lot of people have it worse than I do. Still, most of my days and coping are the same. Small goals, and stay positive. You’re an inspiration, thanks for all you do.

    Liked by 1 person

  2. Sam you are such an inspiration. I literally don’t know how you do it. Before I lost my health, I was a mental health therapist. I would like to write and blog but don’t know where to begin. Any pointers?

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  3. I did so want to do this unfortunately my body wasn’t as ready as my desire. At times I can’t think or talk coherently unless I wear my soft collar, which is not the most comfortable in the hot weather but I’m hoping now the weather is much cooler I’ll be able to keep it on longer and then my fingers and brain will hopefully work better.

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  4. I am so sorry for my very delayed comment! Thank you for sharing this. Pain definitely can not only be exhausting, but incredibly isolating. I tend to try my best to put a smile on and keep moving forward. I know you will understand this faking the smile never makes the never-ending pain go away. I feel that if I allow the pain to have control, it wins the fight. I also feel that if I acknowledge my pain I won’t be able to keep moving forward. I am forced to work full-time and carry the burdens because my husband hasn’t worked in 2 years and still doesn’t help me around the house. There is not an actual reason for him not working. There isn’t anything medical which creates a lot of resentment and I hate that feeling worse than the pain.

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    1. Hi Alyssa, I’m really sorry you have to live with a life of chronic pain too. You’re so right about it being isolating. It’s so very hard to explain what it’s like and the impacts it has on daily life is often different for each individual.
      I’m so sorry for the situation with your husband. The emotional stress that must cause would only heighten your physical pain I’m sure.
      Thinking of you. Please take care xx❤

      Liked by 1 person

      1. Thank you Sam! As you already know the pain isn’t easy to live with. I feel very alone a lot, but at least I have my amazing blogger friends that understand. The emotional stress from dealing with my husband has definitely increased my pain and honestly I am worried it will send me into a relapse. I haven’t told anyone that before, but I know you will understand. I am doing the best I can to take care of him, my two adorable cats, the house and myself. I hope you are having a great weekend! xxx

        Liked by 1 person

  5. Thank you for sharing what a day looks like for you. It’s so helpful for those who want to be an encouragement or even to simply understand. While I don’t deal with chronic pain, I do suffer from chronic illness and a lot of what you say still applies to me. There is so much I want to do in a day, and I never ever ever am able to get it all done. On the days when I ignore my body’s needs and push hard and get lots done, I pay for it the next day (and deeply regret it). It keeps me humble and dependent on the Lord, and for that I’m so grateful! He is faithful!

    Liked by 1 person

    1. I so understand Jana. I’m sorry you are living with chronic illness too. How blessed we are though to have our faith and know that God is by our side through it all. Thanks so much for your encouraging comment. Love and prayers xx

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  6. You are such an inspiration to me Sam! As I woke up this morning my pain was screaming at me. I started doing the blog reading of others to try to distract me from my pain. I have to leave the house today and I’m dreading it. Then, I read this and I am encouraged to keep looking at what I can do and to be grateful for it. I need to set more little goals and you reminded me of that.

    Liked by 1 person

    1. Oh April, I can so relate. I’m in the car on my way to hospital for a day surgery procedure. To be able to leave home at 8am, I needed to wake at 4am to take all my pain meds just to be able to have any hope of getting here.

      I’m so glad my blog post provided you with some encouragement today. Praying you are able to get out with some level of comfort.

      Blessings xx

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  7. I’m so sorry for everything you have to go through, Sam. Pain is endlessly tiring. I’m thankful that mine is minimal, but when it kicks in, I’m so thankful for the Lord and His love, mercy and grace. I love your positive outlook. I think optimism during tough situations is the only way to go. Keep smiling Sam. I’ll pray for you!

    Liked by 1 person

  8. My post this month is also about pain! People who don’t live with it every minute of every day can’t imagine. Heck, I live with pain every minute of every day, and I can’t imagine your pain, because they are so different!

    Your philosophies and strategies are exactly the same as mine!

    @dSavannahCreate from dSavannahRambles xoxo

    Liked by 1 person

    1. You are so right. Unrelenting pain is just so hard to explain isn’t it. Partly as there are so many different kinds….nerve pain, mechanical pain, inflammatory pain, arthritic pain, bone pain etc. Sometimes we get it all at once. I wonder sometimes how the body keeps going and doesn’t just shut down.

      I’m so sorry you are also suffering constant pain. I’m going to check oit your blog post and share too. Thanks so much for commenting xxx

      Liked by 1 person

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