It’s just going to be one of those weeks! Last weekend, I only did things that everyone else would do – go to the shopping centre, cafe and to my daughters to help her clean her flooded apartment! But yet – the last two days, I’ve been floored, seriously floored! As I lay on my sofa with my heated throw, hating that I have not even been able to participate in normal regular activities and this is the worst part about having a chronically invisible illness. It is a life sentence, and unless there is some miracle cure, its with me for forever, there is no getting better soon, no happy ending, there is no end in sight, there is no cure or end game. It isn’t even the physical pain anymore for me thats the hardest thing to deal with, it’s the emotional and mental pain that goes along with it. The guilt, that I am a burden to those around me. Days , weeks like these feel like I’m being crushed, that these illnesses are drowning me and swallowing up the person that I am, leaving only a shadow of the woman that I am and in place is a patient that is ill and weak. Its so hard to deal with.
How am I supposed to fight this emotional and mental choking when simply my illnesses are never going to leave me! If was to have a ‘normal’ illness ( whatever ‘normal’ is) I would see my doctor, I would get a diagnosis, receive my treatment and get better. These illnesses just dont follow a schedule like that. Oh no, my diagnosis were long winding and so very difficult as my symptoms intertwined like a tangled ball of yarn. It was frustrating and confusing for me and the many specialists and it still is. Even as I’m scrambling these words in my journal it is so hard to truly describe this tiredness that never really goes away, or the numbness that fills my limbs, not to mention the twitches constantly moving my arms and legs. Being constantly ill like this is like living in a dark hole of doom and I hate it because I know my true spirit is a positive free spirited goddess. I can’t plan anything as I have no idea how i will feel when i wake up, or when I will go to sleep. It is so hard not to feel anxious and depressed when I live everyday in a life where there are more questions than answers.
People have no idea of how to deal with chronic illness, both the person who has it and the people around them. There is no textbook for living with these illnesses, so when I’m asked what do you want or can I help you – I can’t answer their questions because I don’t usually really know myself. You see when you have an illness or illnesses like these it’s your body, literally fighting against itself. The physical side of it is your body living in constant aches and pains, tiredness, toilet trips to self catheterise, medications, food intolerances along with many hospital appointments and stays…….and the list goes on. This is not normal living which really drains me mentally and emotionally.
What I’m trying to show you is that I feel like a failure, constantly feeling letdown by my own body. I constantly feel guilty, like a burden to others. When my illnesses take hold like this I feel like im having life squashed out of me. A heavy weight hangs over me that my illness affects my husband and children ( and I’ve even lost some because of them) that I am not the wife he deserves or the mum they need. These stupid illnesses hold an embarrassment within me that my body is so broken.
Yes I’m rambling these words because it is a bad day and stepping towards a bad week, but I know that tomorrow or next week, it won’t feel so chronic and the good days, where I have less pain, fewer dizzy spells making it easier to move around with my walker and this will increase the higher positive energy in myself, I will again feel proud of myself, that I got through yet another bad patch and I will enjoy the life that I live in.
This is my life and i have to learn to live and love it. Ive certainly learnt that life does not always turn out to be the one that I hoped for, but it is the one i have and I can’t change that. Ive had to learn to embrace and enjoy the good days because seriously I don’t know when the next one will be but they will come again. I appreciate the smaller and more present things in life now. I have to take control of my own future and try everything i can to make health better, through simply walking, talking, sharing and living the good, bad and indifferent of chronic and invisible illness.
This is my life with chronic and invisible illness what is yours.
‘Let’s not tear each other down, it’s about walking together’.