Pain can’t just be ignored. Disease can’t just be ignored. People with disease and pain can’t just be forgotten.
I’m not alone in suffering horrific daily pain. So many in society struggle every day. Some manage to work or interact with the wider community in some way. Others like me, live a permanently reclusive life at home, interacting with friends, family and support groups through social media. Some can’t even manage to use devices to connect to anyone, other than carers who visit or live in.
We all need friendship, love and understanding. We all need to feel connected.
It can come in the form of a simple text just to say, “I’m thinking of you, I care, are you ok?”
It only takes a moment for a friend or family member to send, but it can make a pain sufferer feel connected and cared for all day. It can help them feel like they’re not lost in a world of disease and symptoms. They are a part of life, they are more than their pain.
A Peek Through My Window
I thought I’d share a peek through my window of pain. A little look into my average day, in the hope others, battling chronic pain and disease, may feel less alone and those who don’t suffer chronic debilitating pain, may gain an understanding of what it’s really like:
- Wake up around 4am, from a generally broken nights sleep, to take my first round of pain medication.
- I try to sleep for another 2 hours but the pain generally overtakes. I lie there until around 5.30am hoping and praying the meds will kick in enough to allow me to breath.
- Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear without soaring pain until the next round of medication. My back often paralyses my legs and I simply can’t move until anti inflammatories and steroids help take the pressure off my spine. When I first get up I only get as far as the ensuite and sit on the toilet for as long as it takes to be able to get on my crutches again.
- I eventually make it to the kitchen and put the kettle on. Breakfast has been laid out the night before to make life a little easier. I also have my walker waiting for me, which gives me more support and has a seat on it , so I use it as a wheelchair to help me move to make my tea and put milk on my cereal. I try and leave my husband to sleep so he can have all the strength he needs for the day ahead, but If I can’t function at all he gets up to look after me. On those days we sit and eat breakfast in the lounge room and watch the morning news and chat together. Generally though I’m determined not to disturb him and once I’m settled in my lounge chair, I use the quietness of the early morning to check in on my online support forum, my podcast, my blog, emails and messages. All great pain distractors.
- I take my second set of morning pills with food which is why breakfast is essential. 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. I still make plans in my head of all I’d like to do during the day, knowing I’ll be eliminating items from the list constantly. Staying perfectly still my back, legs and feet hurt, but it’s a duller pain. The slightest movement and it’s like I’ve broken everything all over again. Fractured feet and fractures in both legs add to my overall disability. The spinal stenosis, nerve compression, annual fissure and spinal instability 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. The heat of the shower helps the pain, even though showering itself is like participating in an Olympic event. Nothing is easy. Nothing is normal. Nothing!
- 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 the ability to move without thinking. 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 to keep as much independence as I possibly can. My husband does all the washing and cooking as it’s outside of my capabilities due to pain and disability.
- 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. Necessary spinal fusion surgery is now deemed too dangerous due to the integrity of my bones. I could end up permanently paralysed or die from a severe infection. Pain has to become my friend, my norm.
- 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, recording Podcasts, 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 or read. 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 on better days, with short picnics in local parks.
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance in a hurry, 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 nearly 8 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.
Chronic Illness is a part of our life, it’s not all of our life. We can’t let it completely control who we are, not if we want to find a way to live with it.
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 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, but for someone dealing with debilitating pain and resulting disability, they are like climbing mountains.
- Celebrate the achievement of those goals. Making your favourite hot drink, watching a favourite TV show, chatting with a friend if you have the energy, can all be wonderful treats for achieving something. Having a cheeky chocolate with a cuppa is my favourite. 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 it takes some pressure off my husband. I am also only asking for help in areas I simply can’t help myself. I’m making sure I still keep tasks I can do. It’s so important for my well being to retain as much independence as possible.
- Take time to be quiet. Stress and over activity, even if you’ve enjoyed it, increases pain levels. Taking time to be peaceful, prayerful, quiet or perhaps just listen to music, helps reduce the intensity of my pain.It feeds my soul and really helps to soothe my pain.
- Don’t Expect No Pain. Chronic pain means just that. Ongoing, here to stay. An expectation of “no pain” will actually increase your pain levels as you are fighting it, rather than managing it and finding ways to live with it.
My pain journey is far from over. This broken legs, feet and spine, and bone disease in general, are far from ceasing to cause me issues.
Writing and Podcasting give me an avenue to express my joy and my pain through my health journey. They are healing and comforting for me but I also hope they help 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 it may help you understand the impact it has on those with chronic illness, who are trying to explain what living with pain is like.
I hope you’ll reach out to those in your life who have told you they have chronic pain, chronic illness. They do. It’s real and they need you.
My pain may be my constant companion but I’ll keep on fighting it and hoping each morning when I open my eyes, it might just be a better day than the day before. Hope is a beautiful thing!
If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you prefer an audible blog post, please check out my Podcast, Medical Musings With Sam
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