As lovely as it is to receive compliments such as ‘you’re an inspiration’ or ‘you’re my hero because you’re so strong and brave’ sometimes the most challenging thing for me on the toughest of days is to live up to this. I know in my previous posts I’ve spoken at length about living with a stoma and the daily struggles that comes with it. However, I’d like to share with you the battles I have with my other chronic illnesses and disabilities
I live by a mantra whereby I believe I must get up each morning and give my illnesses a tough fight; make it difficult for my symptoms to take control of my day. Some days I can give my symptoms a good fight and on the toughest of days if feels as though they break me. On the toughest of days, I feel far from brave.
I live with a multitude of symptoms which are linked to various illnesses such as chronic pain, fatigue, intermittent bowel obstructions, nausea, vomiting, impaired kidney function, chronic dehydration and malnutrition, pernicious& iron deficiency anaemia, abnormal heart rhythm, chronic diarrhoea, effects of living with an ileostomy and depression.
I’ve not listed my illnesses for anyone’s sympathy its more about raising awareness for others living with invisible illnesses, although I do strive for positivity as you can imagine some days are very tough. Tough physically, emotionally and mentally. For me these disabilities will be life long, that’s what I struggle with on the tough days, that no matter how hard I fight there ultimately will be no cure. It’s more about management and symptom control. No matter how much I plead to the doctors, no medication, surgery or hospital admissions will fix me long term.
In the early days, I used to be angry! Angry with God, angry with Science and angry with life in general. I’d sit and wonder what I’d done wrong to deserve this and why I’d ended up this way! Various people would tell me ‘sit tight because everything happens for a reason’ or ‘God wouldn’t give you what you couldn’t handle’. As a young woman, this didn’t provide me with comfort this deepened my anger and despair. Although, over the years I’ve come along way with accepting my new self, I still find some days distressing and soul destroying. * In no way am I saying God can’t bring comfort in those who believe in him, in my opinion as an atheist and as a chronic illness warrior I struggle to accept God as a figure of comfort and hope in my life *
When living with chronic ill health, you feel you must be brave. Show the world you’re still smiling and fighting! Show your family and friends that the pain isn’t ‘that bad’. The fact is I keep ugly side of my illnesses a secret because I don’t want people thinking I’m begging for attention or sympathy or to let down the people that think that I’m an inspiration.
There are days where I spend the day, wanting it all to be over because I believe I just can’t do another day. Another day riddled in pain, the pain so severe it makes me sweat and vomit. I feel though I can vomit from every orifice and I’m not a stranger to vomiting blood and faecal matter. Another day where making a cup of tea or having a bath takes up all my energy (spoons). Some days revolve around watching the clock, counting the hours down to the next set of pain medication. There can be days sometimes weeks that I don’t venture outside my flat because I know I look terrible, I know I’ll have to use my wheelchair and there’s a part of me that gets angry with myself for having to use it.
Then there’s the days where I struggle with my mental health due to the impact of my physical health. There’s days that I spend the day with the curtains closed sobbing; grieving for the person I once was. Then there’s the days I get angry where I want the world to pay, I secretly want the world to suffer and hurt. But mostly, I get scared! Petrified that I must cope with my ill health for the rest of my life; chemo, radiotherapy and surgery! Petrified that with every day that passes I’m further away from the person I once was. Worried that I’ve ruined my partners life, stolen away his life too! I regularly see a health psychologist who helps me cope and gives me a safe space to discuss how utterly shit life can be but I even hide things from her. I want her also to see me as someone valiant, not someone who struggles to cope.
You might see the pictures I upload to social media and the campaigns I support but please for one minute don’t think my life is easy because I smile or at times wear a nice dress and apply some make up. I fight for my physical and mental health every day. Just because you might see me coping, don’t mistake me for being brave. It’s okay not to feel brave in response to an illness or crisis! We live in a society that sees coping as courageous but having a good cry as weak! Trust me no one likes the crier, I’ve had friends that I trusted to show myself at my worst, within a week or so they were nowhere to be found.
I’ve endangered my life by trying to cope and show the doctors and nurses that I’m brave, that I can take everything that my illness throws at me in my stride. For months, I travelled to Leeds to attend nursing placements, having to be there for 07:00. I live a 45-minute train journey away! I fought terrible pain, nausea and vomiting, extreme fatigue and malnutrition. I wanted to show the world I was coping, when I was far from that. The doctors explaining that if I carried on I’d kill myself. So, I had to walk away from my profession as it was affecting my competence.
After reading through this do you still think I’m an inspiration? Or do you view me as someone trying their up-most to cope? I see myself as coping, an instinct we all have but it is okay to not feel brave!