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.
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.
My 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.
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:
- Wake up around 6.30am, from a generally broken nights sleep;
- 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;
- 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;
- 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;
- 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;
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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:
- 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.
- 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!
- 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.
- 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.
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
WEGO Health Award Nominee 2019- Best in Show Blog