Everyday Life Changes…..



      The following blog is a summary of how life has changed gradually since 2008. It does not require pity but rather it is my hope that these words will help you to understand a bit more regarding this rare condition, whether it be for yourself or for a loved one. I know that when I was diagnosed I wanted to hear from patients as they can give an altogether different perspective from Medical Professionals.

In Summary :

  • I have difficulty accepting/attending social events if I accept an invitation and it turns out to be a bad pain day I will require additional medication, which in turn makes me tired and also affects my bowel habits. But if I don’t attend I feel depressed and isolated by the pain. I don’t want to be pitied so find myself in a real quandary upon receiving invitations. It has become less about being available to attend on a given date, but rather more about what the results will be to my pain levels if I do attend. I have lost long-lasting friendships over this monster called Chronic Pain. Again, I look fine on the outside so I ‘should’ be able to attend friends Christenings, Weddings, important birthdays, dinners etc and the list goes on.
  •  My sleep patterns are affected. Some nights the pain can wake me, or alternatively not allow me to sleep. I suffer in silence. One time upon arriving at work looking tired after a particularly bad night, it was suggested that I should ‘limit’ my mid-week social events so that I am “fresh” for the day’s work requirements, if only that were the case. I do not tell colleagues as I do not want pity, I just want to feel and be treated ‘normally’. I also feared loss of employment and so I battled on. It is very lonely being in bed by 5.30-7pm in order to make it through the week, but the bills needed to be paid.
  • This year I was unable to attend Christmas lunch with my family as it fell on a Saturday. Following a work week, I currently spend many Saturdays in bed. The long drive to the lunch would also exacerbate my pain. Thankfully I was spared the guilt of making this decision for myself as my mother made the decision for me. I think my family are beginning to realise just how bad the pain is. I try to shelter them the full extent of the pain and its side effects from loved ones as much as possible.
  • The compressed nerve causes excruciating pain when I sit for any length of time. When flying I have generally relied on medications as I was too self-conscious to request a location to stand as much as possible. I soon stopped this worrying after I needed to stand in the Staff Galley for most of the five-hour flight.
  •  I need to use specially designed cushions when sitting, I use this in my workplace along with the rotation of a kneeling ergonomic chair. My current employer thought the extent of my condition was a “bad back”. I work as an online teacher for adults who are training to be Teacher Aides. They have no idea how much medication I took daily in order to be at work. I am fighting with every ounce of inner strength, I desperately wanted to keep my job. This meant smiling on the outside when on the inside my body was screaming out in pain on the inside. I had to carefully monitor my medication intake so that I did not take too much medication so that I could conduct live Webinars and conduct Verbal Assessments with students and maintain my train of thought. The medication causes memory loss and I can often mix the sequence of my words unless I concentrate and focus really hard, which can result in mental fatigue which then exacerbates the problem.
  • I have always loved the exhilaration I feel when studying, but now have to accept that I cannot. It would be expecting too much from my body. I miss the social interactions that studying provided.
  •  My Chronic pain causes distress to my loved ones both emotionally and financially. My son lives interstate but travels home when he can.
  •  I obtained scholarships for my academic excellence. Now I have to check and triple check everything I write to ensure the sentence makes sense… I no longer can write essays that would be awarded high distinctions.
  • Medications do not stop all pain, but it allows me to function in a limited capacity throughout the day.
  • There are days that I do not want to face the day. These are the days where I wake up and the pain is already present. When the day begins this way, I can get up and go back to bed several times before leaving my apartment to head to work. The hardest part of my day is taking that first step out of the door.
  •  I used to be extremely social and enjoyed the company of many friends from a variety of circles. This enjoyment now revolves around my level of pain and find it difficult as I can predict future engagements and acceptances until the day comes.
  •  Today I had to attend a medical appointment. As is normal, I had to wait over an hour to see the doctor. I become stressed as the pain increases, which in turn aggravates the condition. I try to focus on the positives when in similar situations, and today I was grateful for the padded seats in the waiting room.
  •  The seating when going out for meals dictates the restaurants that we choose.
  •  I have put on weight as a side effect of my medication. While I know I have to accept these unwanted changes to my body, it also means further expense as my wardrobe needs to be updated to accommodate my new body size.
  •  I cannot attend the cinema/theatre/musicals etc without taking medication, yet I understand the importance of trying to maintain a sense of normality to ward of depression which is so commonly associated with CP, for good reason.
  • I have no choice but to maintain a healthy diet as constipation and diarrhoea rule my world and can exacerbate the condition. 

I think that you are beginning to get the picture of what living with Chronic pain may entail. The ‘old’ Narelle would have read through this piece of writing several times and perfected my message that I want heard. ‘This’ Narelle is just very happy to have put my thoughts together in a legible fashion, hopefully getting my point across as to how life can be when living with chronic pain. There is still so much to be said but I am not certain that it really matters. Each sufferer fights their own daily battles and draws strength where they can.  Life and gratitude for simple things now takes on a whole new meaning.

3 thoughts on “Everyday Life Changes…..”

  1. You did an excellent job of telling it like it is. I now have my pain pretty well controlled but find I can use the all the things you mentioned as signals that pain is too high and I need to do something to get better control. Reading your post also brought back memories of when I didn’t have my pain controlled. Pain pretty much robs us of our lives. Part of the reason why my pain is under control is that I made a lot of changes to my lifestyle – I found a new normal. But I can’t take total credit – I also found combinations of medications that addressed the central nervous system dysfunction that results in the pain of fibromyalgia.
    Thanks for the good post.

    1. Thank you for your words of encouragement Pat, living with a chronic illness and all that it entails is certainly life changing. I sometimes feel that I have reached a place of acceptance then a new challenge will arise, and so the cycle begins again. It is always great to hear from others who really understand, it breaks down those feelings of isolation. Hope you have a wonderful week.
      Health & Happiness

  2. I admire your courage to write about all this. I am also a PNE and crps sufferer. Your words inspire me as the only solace I have been able to find with this illness is the support of other sufferers I have met along the way.

    I am curious which cushion you are using for sitting? I have been using the IC Network cushion for 4 years but am on the hunt for something better since it does not seem to be helping as much anymore.

    Much love and support.

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