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.

5 Things That Make Your Bladder Angry

5 Things That Make Your Bladder Angry

No-one likes feeling under the weather, but wheelchair users are unfortunately prone to bladder infections which tend to occur suddenly. These are extremely uncomfortable, and the burning sensation when urinating, along with all the other symptoms, are very unpleasant. 
Considering I’ve been in a wheelchair for many years, I’ve picked up on a few things that either cause the infection or aggravate it even further. So, I’m going to provide you with 5 things that make your bladder angry, to ensure that you don’t pick up any nasty infections. 
Lemon Tea
Many people believe that lemon tea is great for the diet, and in most cases, they definitely are. But, I’ve found that it actually upsets the bladder if you drink too much of it. Now, this isn’t just relating to lemon tea; there are plenty of acidic fruits, such as pineapple, grapefruit, and lime, that will have the same negative effect. 
Therefore, I recommend that you don’t drink too much lemon tea, or incorporate too many alternative acidic fruits into your diet.
Caffeine 
You’re probably wondering how caffeine has ties to bladder infections in wheelchair users, right? Well, as you probably know, anything with caffeine in dehydrates the body a lot, which doesn’t allow the bladder to perform optimally. 
This could be things like coffee, green tea, and energy drinks, so it’s best to monitor how much caffeine you’re consuming. If I do consume caffeine, then I’ll make sure to drink plenty of water to compensate for the dehydration. Usually, this will be twice as much as my usual intake, so around four liters throughout the day.

Alcohol

samanta bullock infection wheelchair model 5 Things that Make your Bladder Angry
5 Things that Make your Bladder Angry
Again, alcohol is another one of those substances that quickly dehydrates the body as you drink it. Of course, we all like to enjoy ourselves and have a glass of wine or bottle of beer from time to time, but it’s important to consume enough water to keep your system hydrated. If not, you’ll most likely notice an infection the next day. 
So, I’m not saying you need to restrict yourself from living your life, but to prevent a bladder infection, have some water with you as well.
Public Toilets
Generally, public toilets are tremendously dirty, even if they may have a clean appearance. You see, there is a multitude of people that use public toilets, and it only takes one of them to pass on bacteria for you to pick up a bladder infection.
If you can wait till you get home, then that’s the best option. But, if you desperately need to go, then just make sure it’s clean because if you hold it in for too long, that could also cause infection.
Catheters 
Wheelchair users often use catheters to make it easier to go to the toilet. But, as you’re inserting it into your body, it’s crucial that you ensure it is clean before you use it. This includes disinfecting the catheter itself and also making sure your hands and body are spotless as well.
EXTRA TIP:
One last thing that can really help, is turmeric. Arguably, turmeric is the most powerful natural inflammatory in the world, and if you’re travelling, it can be convenient to just mix some turmeric into your drink. This will have a positive impact on your body, and you’ll notice the difference in your urine.
5 Things that Make your Bladder Angry

5 Things that Make your Bladder Angry

Hi Everyone.

samanta bullock infection wheelchair model 5 Things that Make your Bladder Angry
5 Things that Make your Bladder Angry

Unfortunately, bladder or urinary tract infections are common for people with a spinal cord injury so I have made this video to share a few of the things that I do to try and minimize the chances of infection. I conclude the video by giving a tip on how to treat a bladder infection naturally.  I hope you enjoy the video and I look forward to your comments and questions.

If you have any ideas about the videos you would like me to make linked to inclusive fashion and my lifestyle please let me know in the comments below the video.

Warm wishes

Sam x