Living With Chronic Pain

I have always found writing extremely cathartic, but none more so than in my current situation of living with Pudendal Neuralgia. I began writing in ‘diaries’ or ‘journals’ at a young age and was also an avid reader. But when writing, I was always concerned that someone would read my private thoughts. To me this would be intensely embarrassing. What if the reader didn’t approve or like what I had written ??? Well it has only taken me over forty years to realise that writing is not necessarily about pleasing someone else, although years and years of post-grad studies certainly reinforced the opposite. What you wrote for the Lecturer/Tutor was all about appealing to the senses in order to gain good results.

It was through one of my online communication tools on Chronic Pain, a request had come from a journalist to hear from people in the community and gather information from the perspective of a patient. I was at a point in my new life of living with pain where my mind chatter was focused on little more than the pain, the future, and what I had lost from my past. In order for me to live in the present I needed to limit the incessant mind chatter, or would the term ‘clutter’ be more suitable, and release the negative thought patterns that I had developed. Quite often, in the early hours of the morning, I was able to facilitate this release through writing or typing my thoughts. The writing process had a dual benefit. Firstly, providing an avenue for a relief of the burdening thoughts I was having and secondly, providing a record of my journey. At first I struggled with the thought of sharing not only how I was feeling but more importantly that I would be judged ie. Don’t be weak, just get on with it etc. However, what I have come to learn through social media is that sharing of yourself and your pain is actually empowering. Sufferers of Chronic Pain should not be judged, blamed or made feel guilty and I want to part of the growing force in speaking up loudly and with strength for myself and other sufferers! I would also like to publicly thank the clever person who came up with Chronic Pain’s associated term of ‘Invisible Illness’, this term should almost be placed in Dictionaries, but more on that in future posts.

I invite you to follow my journey along this bumpy road, as I work through this life that has become mine. I would also invite you to share your  challenges and successes too.

Health & Happiness

Narelle Jane

11 Comments

11 thoughts on “Living With Chronic Pain

  1. I also have recently been diagnosed with saphenous neuropathy…no response in the saphenous nerve…but the doctor won’t call me back…I told other doctor’s including my psycologist that the evaluator said I was a malingerer. I have never stolen, bounced a check, or asked for anything, I’ve never sued anyone, never wanted to be a burden to anyone, always wanting independence…I have so much pride. I can’t face this evaluator in a court room. I thought as long as I continue to get help and send in medical reports with disanoses and report truthfully that I would at least get excused from the clerk 2 position because I cannot stand or sit without pain….guess not. Is anyone else getting assistance with this….I don’t want to fight.

  2. Hi Narelle,
    Thank you for this blog! I live with chronic facial neuralgia from a dental procedure that was done incorrectly. Chronic pain changes your life and just coming to terms with it is a lengthy and emotional process. I am now handling it much better as I come to think of it as my “new normal”. I believe that chronic pain teaches us to be more empathetic and loving toward others. You have such a wonderful attitude and that is something I truly admire.

  3. I’ve read some of your postings and I relate to having a total life change due to health issues, chronic pain, undiagnosed symptoms, etc. I have pain in most of my body. I am also blogging about my story and journey, and I have another blog where I post creativity attempts, which helps with healing. I had to seek alternative methods to finally get some answers and treatments that help. I am currently seeing a fantastic pain psychologist, craniosacral therapist and acupuncturist, who are helping me the most.
    I wish you the best in your journey.

    • Thank you so much for posting. Finding understanding people, even though it is through unfortunate circumstances really provides me with strength, warms my soul and allows me to feel part of a community. I feel the empathy and warmth in your writing and agree with you whole heartedly about the utilisation of your creative side to assist in healing. I cannot wait to view your blog as I am looking for more ways to bring out my creative inner being.

      During the last weeks of my working as an Online-Educator, the nights were spent either being in bed within an hour of walking in the door, crippled with pain, or sleepless nights for the same reason. I’ve never been one to ‘sit idly’, (a skill I am working on 🙂 ) I am not sure where the idea came from as I’ve never even sewn buttons on before, but I chose to make a patchwork quilt. Not sure WHAT I was thinking! My illness causes intense pain when sitting, again I didn’t think about that when the idea popped into my ‘fuzzy, marshmallow brain’, still in denial at this stage. But it was indeed a blessing in disguise. It taught me the true worth of ‘pacing’. It also made my brain think laterally, if I couldnt’t sit for lengthy periods, how would I ever complete such a grand task? Bring in the ironing-board. I was able to place the ironing board at the appropriate height, according to whatever my pain levels required. I could drag it over to my very soft seated lounge and position it at the appropriate height, or I found I could stand after again adjusting the ironing board and still sew adequately. I was also able to take pieces/blocks with me when in hospital, its quite a portable craft. An added bonus was that it really challenged my cognitive processes, quilting is a little like a jigsaw, working out a pattern and then remembering how to repeat some of the patterns during the next session, now that was and still is really challenging with the brain altering medications I need to take. But the most important benefit to come from quilting was that once I was underway, the process became quite meditative. During my quilting there were definite times in my transition from being able to work and the heartbreak of just facing each day, that my quilting became my peaceful, quiet place, where I attempt to work out, now where do I go or what do I do that the pain monster had taken over?

      You sound as if you have a good strong medical team around you, providing you with some relief. I cannot over emphasise the importance of a good Pain Psychologist, it is incredibly valuable to have someone that you can talk to, who understands what you are going through, and that also provides a safe place for you just to ‘vent’ or ‘unload’. Research is very strong on the ‘brain and pain’ being a crucial factor in coping and healing.
      I too wish you well in your journey. Keep in touch.
      Health & Happiness,
      Narelle

  4. Hi Narelle

    I know you’re not a quitter and reading your text etc. I can see you’re not. Many years ago, someone told me to ‘give in and win.’ It took me sometime to understand what they meant by this. To me it’s not about giving up, but knowing when to accept some person, place or thing. I think we all make some sort of plans in life as to what we are going to be or do, and then something comes along to knock us off course. I was learning Italian in the early ’90 with a view of moving there and then I prolapsed the discs in my back and as they say the rest is history, here I am on a Monday morning speaking to you thousands of miles away.

    In the early days I was a very frightened bloke, wondering what was going to become of me. I was self-employed, no one to look after me and I had pain that was driving me to despair. I was a massive doctor shopper looking for cures. I think I looked in the mirror one day and the saw the person who was going get me out of the crap I was in. I had been in support groups for another problem and read somewhere ‘if I wanted something, then teach it.’ I started a back pain support group and one of our early speaker was someone from a pain management programme. This was my launch pad. Narelle, that was back in ’96 and I’m get days when I worry about the future etc. I’ll be 58 on Saturday, still single and since leaving the NHS in May, I’ve gone back to being self-employed. What the difference now is that I feel more confident about myself and living with my pain and I think having confidence is perhaps one Tool you cannot write about, it something that has to come with experiencing stuff.

    Take a step backwards is a great idea, it can give you a running start for opportunities that are going to come your way, and they will.

    I know what you mean about side effects from the meds. I have to take them for blood pressure etc. It makes my joints stiff.

    Yep, another Xmas has come and gone. I had a quiet day and had a walk by the river near to where I live, lots of people out there doing the same thing. Had a nice snooze in the afternoon as well.

    I’m off to the Gym later to catch up with my mates there, have a workout, swim and coffee after. Weather here is very mild about 12 degees.

    As always, good share with you.

    Check out the Pain & Self Care Toolkit on Facebook when time.

    Have a good one and easy does it

    Pete

  5. Hi Narelle
    Not sure if this is useful but this is a good site here in the UK for Pelvic Pain http://www.pelvicpain.org.uk

    Like you have been an educator for some years, started off as a Drivining Instructor in the late ’70’s – stopped when the back problem started in the early 90’s. Skills came in handy for delivering self-management courses. Speaking to audiences (public speaking), I had to learn, but love doing it.

    I know there is a groove out there waiting for you to get in to around promoing and supporting pain self-management to others. Remember the cheese.

    Early Xmas Eve here, and sunny but a little on the cold side. 2 degrees :o((

    Have a good one!

    Pete

    • Hi Pete,
      Thanks for the link http://www.pelvicpain.org.uk as I had not come across it before. It really looks quite useful. You are right on target with “Who Moved My Cheese”, I feel as if I have been a mouse on steroids madly running around (not literally unfortunately) looking for my piece of cheese or trying to work out where my maze was taking me. I had lost my way by trying to work out my purpose in life, now that I have been left disabled due to the chronic pain I live with. I have never been a quitter in life, no matter what challenges have been directed my way. This time however, no amount of positive thought can change the present circumstances so I am taking a step back and just allowing myself to be present in the moment. And what will be, will be 🙂
      Christmas is now over for another year and the BIG day has left my body feeling the worse for wear.This has meant I needed to take morphine on top of my usual meds, which has the unpleasant side effects of leaving me wide awake & itchy.Such is life 😉
      Enjoy your xmas festivities!
      Narelle

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