Living with Chronic Pain – The Experience of a Wheelchair User

Living with Chronic Pain – The Experience of a Wheelchair User

My name is Samanta Bullock and I’ve been a wheelchair user for the past 25 years after an accident when I was 14 years old. Chronic pain has also accompanied me on this journey.  It is a very strong pain, a very sharp pain and kind of hot all at the same time. Every one that has this type of pain has different feelings. It is due to the nervous system being damaged and to date there is no cure.  I experience the pain 24 hours a day 7 days a week –  all the time basically. To be in a wheelchair is not that hard compared to living with constant pain.

wheelchair user pushing richmond park samanta bullock
“Walking” in Richmond Park in London

I’ve been to a pain management clinic where they help me to live with the pain and give me some advise on how to manage and ‘soften’ it.
One of the things I have learned is that the pain is not my enemy, it is my friend and it is part of me.  I have made peace with my pain, understood it is there and I have tried to live a happy and fulfilling life.

The other thing I have learned is to change my focus. On the days where the pain is getting stronger and intense I just go to the gym or do another form of physical activity.  Exercise is such a good thing, releasing endorfiness and it instantly making you feel better.   Alternatively I  watch a funny movie.  Once your mind concentrates on something else the pain does not have any space to be present . I also go out with friends, talk with my family. Simple things take the attention away from the pain. It all helps.

I have learned to understand that sometimes there is nothing I can do.  If I am extremely tired I now accept that getting some rest is part of the game. I no longer criticise myself for that.  I accept I am tired and with some rest I will be feeling much better.  Taking pain killers helped. Sometimes I didn’t need much, just enough to keeping going. For sure, in the past,  I was on so much medication and it wasn’t helping my overall wellbeing.  I was always very tired  and my memory affected. Also the body is smart and the more medication you take more the body gets used to it. So every time you increase the dosage of a drug the body will adjust and soon you will need a higher dosage. After 24 years I was tired of using drugs all the time and dealing with the side effects including nausea, fatigue, dizziness, sores,etc.

vegan food wheelchair user samanta bullock pain
Healthy Eating

So I started to meditate, and it has helped so much. To be in the moment, to filter my thoughts and to soften my emotions.  Meditation makes me much more aware of my body and my emotions.  But the best thing I did for my pain was to change my diet. Pain comes to show us that something is not quite right, such as when I need to go to the toilet  or when I have an infection, or when I am sitting too long in the same position. Any ‘wrong’ thing that my body recognises as a threat can trigger pain. So I learned to monitor my body very closely.  I realised that too much sugar or when I couldn’t go to the toilet  because my stomach was dry, were the first causes of my pain. Too many classes of  wine, chocolate or cakes at night would cause me to feel pain all night. So I went vegetarian and it has made all the difference.  I think that because I am no longer eating meat I can empty my bowels more often and I wasn’t constipated any more. My level of energy increased and I could start to reduce some medicine that I had been taking for years.  This effect became a snow ball.  The better I felt better the more I reduced my medication, the more energy I had, and the less I wanted to eat meat and processed food. It is not that I don’t eat any processed, but now I am much more aware of everything that I eat and how my body responds to it.

I have reduced my medication by 85% and I hope in the future to be ‘drug free’.  For sure I still have my bad days, mainly when I am sick with infection  but since changing my lifestyle I have far fewer infections.

Shall we have a “cup” together?

When my pain comes I ask if she wants to have a cup to tea with me!  Its part of me, but she is is much more gentle nowadays and I hope that is the way it will be. I am keeping my part of the agreement with her I don’t give her many reasons to be there and she respects that and doesn’t disturb me too often. We are living in peace right now.

Please let me know in the comments if you have any pain and how you  deal with it.