When I started this blog back in May 2016, my aim was to share my honest experiences about living my life with a chronic condition. I wanted to write as a way of expressing how I was feeling in order to help myself digest what had been going on. Also as a way to pull a lot of the jumbled thoughts, feelings and emotions out of my brain and compile them onto a page that I could read over and better understand myself.
My aim was also to try my best to help others going through the same thing. I wanted to try everything available in order to help my situation and guide others in the right direction based on my experiences. I wanted to prove that having a chronic condition does not mean that you can no have a fulfilling life. I have tried so hard to make sure that my posts have not been all doom and gloom and haven’t been littered with too much negativity. I have tried to be positive about my situation and hold onto the hope that things will get better.
But, I ultimately feel like I have failed in the sense that I have not found the answers that so many people seek. I have not discovered how to live a fulfilling life whilst living with Fibromyalgia. In fact, I have just spent a lot of time searching for answers and hoping that something will change without knowing or understanding what earth I can do to change it. I have spent the last 3 years, trying different medication and therapies in the hope that I would eventually find something that would work for me and allow me to be more ‘normal’. I have tried to be positive in my posts when I have felt far from it and have tried to give advice that I, myself have struggled to follow.
The reality of having a chronic condition is that no one knows how to help and there is little to no help and support out there. Doctors don’t know what to give you. The advice you are regularly given is to rest but, my question is how long do I rest before anything changes? How long do I have to wait before things get better? Why is it just assumed that people with disabilities don’t want to have the same opportunities as everyone else? I want to move out of my parents, earn my own money and live my life like every other person strives to do. However, without the energy or the ability to work, how on earth do I achieve anything? I don’t know what my purpose is and I am stuck in this never-ending loop in which I do not progress.
Every day I wake up and prefer to stay in bed and go back to sleep as I have no idea what to do with my day. I am also still so tired, even after a long nights sleep that I might as well stay in bed anyway. My up and go has well and truly up and gone. My pain follows me around and makes everything even harder to deal with but, I continue to hide it and smile. I want to inspire but, instead, struggle to even motivate myself. I have always been determined not to let this condition break me down but, it has done none the less.
It is so disheartening to think about all of the things I have tried to do in order to better my situation that has ultimately made no difference. Time has been wasted. Energy has been spent. Pain has been increased. My body has had to battle harder just to get me through another medication trial as the additional side effects have been the only change. People say I am strong but, I don`t feel it. I feel defeated and as the new year approaches, it scares me to think that I may well be in the same situation this time next year as I was this time last.
I was not sure whether or not i should share this post as is it far from uplifting and helpful. However, this is how i feel at this moment in time and i think it is more beneficial to be honest about the reality of being ill rather than telling you that everything will always be ok. Being chronically ill does not make you inspiring. You have no choice but to brush yourself off and carry on. It takes strength and determination to live and not just be present in your own life.
Not every story as a silver lining, a lesson to be learnt or a happily ever after. Being positive does not miraculously make you feel better. Focusing on the small things will not make you forget about your want for the bigger things. Money does not buy us happiness but, it certainly makes life easier. Sometimes we don’t learn from your mistakes. Sometimes we don’t get the answers that we are looking for. Sometimes things are too tough to handle and we want to give up. However, what we all have to realise (myself included) is that these things do not equal failure and these things DO NOT MATTER! We are just living. Just like everyone else. We are trying to navigate this confusing world. We compare ourselves to others, filter our photos, follow the wrong people on social media, worry about money, about what people think of us, whether we are doing enough, whether we deserve the shit we deal with, the list goes on and on but, like myself, we can’t keep expecting to see change if we don’t make one. I have been struggling mentally but, have ignored it. I am in pain but, still don’t listen to my body and fight the urge to rest.
This year i want to focus on looking after myself better and listen to my body. I want to become a better me, for me. I want to instigate change and make steps forward rather than back.It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change. Charles Darwin