Over the last 9’years since my diagnosis I have been down the path of research and discovery of every diet, treatment and “miracle” pill on the market in the hope to find some relief to the Chronic pain. I have even tapped into literature and techniques that work with Re channelling my brain wiring to get my pain receptors to communicate again and send my body the right messages.
Living with chronic pain and constant infections and illness is not something I find easy to do. Being a type A personality who likes to be in control of all things in my life this I must say has been my greatest challenge. The complete lack of control. I must admit however it has also been the greatest blessing as you learn to simply be in what I call the “Is-ness”.
The “Is-ness” is just that allowing yourself to be in what space you are in completely consciously. Part of doing this is when I am in excruciating pain instead of my normal habit of becoming angry and frustrated and basically pissed off, I simply greet the pain and welcome it in. I allow myself to feel it instead of fight it. I give it space to be what it needs to be in that moment. I don’t go into victim mode or woe is me mode as that honestly just annoys me further.
I have found that since I started working with this process and embracing and understanding the wiring of my body more, I understand how to deal with the pain better.
I have also learnt that unless you live with Auto Immune Diseases and Chronic Illnesses you just can’t rationalize what it means or the constant challenges that come with it.
I have discovered that there are two kinds of people in my life. The friends who have taken the time to try and understand it and who consciously realize that I have a disease that means I am often ill and often with the most insane left of centre infections and illnesses and they do their best to supportive. Then I have the friends who just simply don’t get it and make comments like “Are you sick AGAIN”.
Those comments I must say at times have been like red rag to a bull for me as I certainly don’t wish to be sick AGAIN and as irritating as it is for them I wish they could realise how irritating it is for me. That said I have reached a stage in this truly interesting journey I am on of acceptance. Acceptance of what will be will be with my health and that each person in my life is trying to understand it in the best way they can.
The last 18 days for me have been rather a missmash of emotions and a bit of an emotional roller coaster as struggling to breathe is one of the toughest things. One of the things that I get often due to my immune system is chest infections and pneumonia pretty quickly.
It’s one of my toughest things to work with as you feel claustrophobic and exhausted all at the same time. You have moments where you feel like screaming and shouting and having a good cry and then you just pray for sleep as you are just SO tired.
I normally try barter a deal with my Pulminologist to rather treat it at home as then I get to be in my happy place with my pooches, but I have learnt when I can’t do it on my own and need to come and be cared for. That again is a massive hurdle that I have overcome and I wish to acknowledge and honour myself for. I can be one stubborn cookie.
How I have changed the way I look at things has helped me to prepare myself better for these moments. I now know that in order for me to not lose my mind completely I need to just bring the stuff I need with to make the stay less annoying. I bring my own special pillows, my laptop (Netflix binge essential), my journal and my meditation music. Each of these simple things help me to pass the time better and distract me from then pain and frustration.
Everything we do in life is about how we look at it and how we give it perspective. I know that for now I just need to surrender to the treatment and allow my body to heal and that anger and frustration will not in any way help me to achieve that result.
So as you start your day today do so as the best version of you. Do it in a way that honors how you feel and what you personally need. Every day that will be different but as my Native American Teacher always says “Everything is exactly as it should be right now”