Unrelenting levels of pain, excruciating pain, day in day out is isolating, exhausting & 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 and 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 & 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 & I have constant muscle bleeds into my femur.
It’s been 32 months with no healing so we are at the “grasping at straws” stage. I am facing major surgery later this year to replace the existing rod entirely and undergo more bone grafting. The first attempt at bone grafting just saw my bone disease dissolve the graft. My Surgeon & medical team couldn’t believe it.
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…. they would at the moment I think if they could see me in the privacy of my study!
So how am I managing my pain at the moment? Truthfully, not very well. It is the worst it’s ever been.
I thought I’d share a look through my window into my average day in the hope that others may feel less alone:
- Wake up around 6.30am , from a generally broken nights sleep
- Take pills before I try and 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. I only get as far as the ensuite & then straight back to bed
- My husband brings our breakfast upstairs on a tray & we watch the morning news & chat together.
- 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 refuse to cry. 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.
- I’m determined, so I slowly slide out of bed and I negotiate each step carefully down the long passageway to my stair lift. Every step is like a stake going through my leg.
- I make it downstairs, make it to my armchair and need coffee. I love my morning coffee. I savour it and I celebrate each morning the fact that I actually made it downstairs.
- I come down in my dressing gown as I have no energy to shower just yet. I will eventually return upstairs later to do that.
- I want to run around and stack the dishwasher, dust the furniture, have a quick shower and do my hair and makeup. 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. I am that slow.
- 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 reach….for now.
- I still have goals to get better & resume those activities, even though there is no cure for my disease & my prognosis is unknown.
- After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for a few hours. I’m not a day time sleeper so I just relax as best I can, reading, watching TV and administrating the online forum I love & manage.
- I come back downstairs for dinner and my evening pills and am back in bed by 7pm. My husband joins me upstairs and we watch TV together. We love our evenings.
- I rarely leave the house aside from medical appointments but I have goals to get out more. I’m determined it will happen. I’m in the process of getting an electric wheelchair which is so exciting.
- I have goals of getting out for coffee soon with my husband so when that chair comes, I’ll dose up on stronger pain killers and give it a go….can’t wait!
All of the above is my normal routine unless……my stoma, whose name is Rudolph, 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 nearly 4 years, as the pain and disability from having a bowel prolapse was horrific.
It can all feel relentless and never ending for anyone in severe pain but I still believe staying as positive as possible is so important in managing it.
That is 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
My few very simple tips to help cope on some level, with the unrelenting daily grind of disabling pain are:
- Setting goals that you can achieve is so important, even if it’s 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’m in the process of getting care support for Podiatry, Physiotherapy, Respite Care and I am comfortable doing that because I really need it at the moment and so does my husband. I am also only asking for help in areas that I simply can’t help myself so I am also making sure I still keep tasks that I can do. Again it’s so important for my well being.
My pain journey is far from over. This broken leg and bone disease is far from ceasing to cause me issues. Writing gives me an avenue to express my joy & my pain through my health journey and that 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 better, others who are trying to explain what living with pain is like & the consequences it has on their daily life.
Pain, pain, go away……maybe not 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 are living with chronic/complex disesses & looking for genuine support & care please join others who understand on Medical Musings with Friends
I’m also a Contributor at “The Mighty”