Some of my friends are in horrific pain from long-standing injuries. I have watched their struggles and bravery in absolute awe, and have been suprised at times when they ask me how the hell I manage. I reply that I could inquire the same of them! This past year, I had referals to see a neurosurgeon, urologist and attend a pain clinic. Have I been? The answer is no. I couldnt afford the time, which is a reason high on the list. Home schooling my daughter and attempting to finish a book has seen me beg for leave. Just as I feared I wouldnt be able to prolong what shall need to be done, I found I could get through. I want to wait until my daughter is a little older, until more structures are in place, both financially and otherwise. I have a remarkable friend who is in the process of having a neuro stimulator installed, and this may well be where I am heading. In the meantime, this is what I do to cope.
- Hot shower first thing in the morning. I have a seat in the shower, and let the heat spray on my spine. I then apply a mixture of essential oils (such as Wintergreen), or a liniment to my spine.
- I use a back brace, which supports my abdomen and lower spine. It is extraordinary, the amount of support this gives. I got fitted at a medical supply store.
- Whenever I am sitting, I use a lumbar roll cushion in the small of my back to provide support. If I didn’t have this, I would need to lay down more than I do already!
- To support my spine and my kidneys, I drink a lot of water and herb tea each day. It is particularly important as I self-catheterize.
- I try to walk at least thirty minutes each day, or work with weights at home.
- I spend several hours a day laying propped up on support pillows on my orthopaedic bed. People don’t usually realize this, but it is a necessity after a particularly busy day! I am often in bed by 6.30pm. Fortunately, you can take your work with you!
- I was recently on a camp with my daughter. I knew that we would have a hectic schedule, and be sleeping on air mattresses. I advised my doctor, and made sure I had extra pain relief to help me cope. I also took my trusty TENS machine!
- I scheduled a rest day for when I arrived home. I needed it!
- I try not to compare my schedule with other people’s. Their journey is their own, particularly if they aren’t deaing with chronic pain and incapacitation. I can only do what I can.
- It is okay and normal to have down days; times when the pain is relentless and steals every ounce of energy. Roll with it. Your body needs to stop.
Be kind to yourself and don’t over-commit. It’s okay to play it by ear and see if you are up to activities on the day. It is a miracle that you are functioning at all, so give yourself a pat on the back! There will come a time when I will accept further treatment, and I will be grateful for it. Every life has seasons, and the time of reparation and recuperation shall arrive. In the interim, I listen to the concordant trill of birds. I sit outside in the sunshine and eat my lunch with a light breeze tapping my shoulder. I see friends and post silly memes to give myself a giggle. I try to reduce life into bite-size pieces of beauty, and live in the moment.