Thread by @racenutt68

1/ I am going to give this a try and do something brave. If you are in pain or know someone who is, maybe this is for you. I hope I can encourage someone. I was asked if I would write about how I have dealt with constant 24/7 physical pain for the last 15 years.

2/ What I have learned through this journey is priceless, but I wouldn’t wish it upon anyone.

3/ I suffered a spinal chord injury by way of a herniated disc in T5-6. It altered the sensations in my left leg and foot from the ribs down and my right leg and foot from the hip. Initially I couldn’t walk as the bottom of my feet felt round and I couldn’t get my balance.

4/ It was hard to move around the house and I used a wheel chair if we had to go anywhere that involved more walking than from the car to the Dr’s office. My goal for each day was to get washed and dressed, and that didn’t always happen.

5/ The pain in my feet, legs and butt was horrible and it was relentless. At times I wanted to scream and felt trapped in a nightmare. Those of you who have experienced that kind of pain know how tortuous it is. Since it was nerve pain the Dr gave me Gabapentin.

6/ It is an anti-seizure med targeting the nervous system. I was given a large dose and was told to increase it. I started to lose time. I think it just dulled my brain decreased short term memory and auditory processing. It made me sleepy and I couldn’t get enough sleep.

7/ Early on I made 2 decisions. One: I thought out loud to myself, “if all I can do is sit…then I will sit with God. I will turn my face toward Him and trust Him even though I didn’t understand what was happening to me.” It was a conscious decision.

8/ For hours on end I read my bible and wrote in a journal. Tears would stream down my face as I poured out my heart. Or I would just sit. It was a very precious time, but I wouldn’t want to go back to that place again.

9/ The second decision was I wouldn’t let them call me disabled nor apply for a disability parking pass. I thought that if I did, I would never get better. I felt I would always be boxed in by the diagnosis and who ever gives up a parking pass once they have it.

10/ Eventually I got enough control of my right foot and I could drive again. Always God would provide the nearest parking spot for me. I noticed as I got better, the parking spots gradually got further and further away from the door I was seeking.

11/ The first thing I discovered was if I could keep my brain occupied I would forget about the pain for a little while. It was hard to do with the brain fog but I played games on the computer. I tried everything I could think of for the pain.

12/ A turning point came on New Years day (8 months later). I got out of bed and walked to the living room and I felt so sick that I just went back to bed. Sick because mobility causes all kinds of internal issues which increases toxicity in the body.

13/ I cried out to Jesus and his Father, “I can’t live like this! Please take me home”. I was disappointed when I woke up a few hours later. My husband was watching a program “You are What you Eat”. I watched several programs and it woke me up to the power of food.

14/ Discovering the nourishment of food has been a whole separate journey that continues to this day. It has helped with the internal issues that developed from being inactive. I was so sedentary, my watch stopped (a motion wound watch).

15/ Another turning point came with some prayer and ministry. After that I was able to titrate off the medication quite quickly without feeling any increase in pain. Halleluia!

16/ At a special church service, after prayer, the pastor touched my hand and I broke out running around the sanctuary, well jogging kinda. The pain was still there, but feeling my lungs expand with air felt so good. Just to be able to move was exhilarating.

17/ I was still in pain, but I could run anyway. I started to run on the tread mill at home. Movement caused everything to feel worse and increased the pain I felt. I discovered that afterwards, when it settled, I would feel a little better than before I started.

18/ I went to a chiropractor, tried Bowen therapy, went to an osteopath, a back doctor that put long very thin needles into the muscles surrounding the discs along my spine. I considered going to the U.S. for surgery but was steered away from this option.

19/ I went to a sports massage therapist, which at the time seemed to help the most. The fascia around the muscles gets really tight. Recently I have discovered Graston Therapy and it has been helping to settle the fascia.

20/ The fear of pain is sometimes more crippling. At times I am afraid to try new things, even though (as I look back) every year I am still getting a little bit better. It is still hard. I work with a trainer once a week to keep strength.

21/ When pain gets overwhelming I let the tears roll down my face and keep going as best I can. I have learned that afterwards I will feel some relief. Some days I am full of self pity, it all feels too much and I give myself permission to be sad and grieve.

22/ I always give myself permission to give up when it is hard. but then I think, if I don’t keep moving forward what will I do? Crawl under a rock? That’s just not an option.

23/ I went for brain therapy to see if strengthening my brain would help it to take control of the nerves that were screaming at me all the time. They encouraged me to write a list of the symptoms I had.

24/ Every so often I review that list and I can see the improvements over time. I celebrate EVERY tiny change I notice. This was huge for me. It gave me strength and encouragement and helped keep me grateful for all that my LORD has done for me.

25/ It was hard at first to celebrate the tiny increments because I was looking for big improvements. I wanted to be healed. Now all those tiny steps have together become huge improvements. I talk about those improvements to my family and friends. I find Joy there.

26/ You can’t tell by looking at me that I am in pain all the time, unless it is a bad day, and then you might see it in my face. Making decisions can be hard when you’re in pain. I get overwhelmed a lot, but not nearly as much as I used to.

27/ Tell the people around you what you are feeling. A good day, a bad one, an emotional day (you don’t have to be in pain to have these kinds of days). You don’t have to face it alone, people want to help, even if all they can do is give you a kind word.

28/ I struggle with having enough energy to do the things I want to do. That makes me sad. I can still have the odd day when I can’t get dressed and washed. I can rise for an occasion, but then crash for a few days afterward.

29/ Life is so much better now than when it first happened. There have been lots of life’s milestones along the way. I turned 50, then 60, went to my first NASCAR race, had our first grand baby (we now have 5), my son got married, and we retired.

30/ Life doesn’t stop. I went back to school and became a Registered Practical Nurse just because I always wanted to be a nurse. I graduated with honours and worked for several years as an Advanced Foot Care Specialist.

31/ Because of this training I was able to care for my very elderly Dad. That sure helped my heart. I grew and I changed. I have more empathy and compassion for others who are struggling.

32/ Pain changes you, healing changes you, and sometimes the other people around you won’t like the fact that you have changed.

33/ I had just started at a new church when I hurt my back. One lady that I met came to my house to see how I was doing. I told her all I could do (at that time) was sit. She said “Well, I am happy just to sit with you “. She has become my dearest friend.

34/ I continue to search for new therapies and to be grateful for the improvements I have seen. I have tried some cannabis for the pain but I haven’t had much luck. If anyone has more experience with this I would love some input.

35/ Today, I can walk for miles/kilometres if I have the energy. I am still in pain. I can never give up, and neither should you. Life still has gifts for us and I don’t want to miss my life.

36/ If you read to the bottom - thank you.

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