It's difficult isn't it, when you find yourself straddled uncomfortably between happiness and misery.
Like some sort of 50 Shades of Grey activity where you've forgotten your safe-word it can be incredibly difficult to manoeuvre yourself out of a situation you're not comfortable with.
You stretch out a hand towards the life you envision for yourself yet it's always just out of reach. It's a painful losing battle to find yourself disappointed again and again at the hand you feel life has dealt you, and you're seemingly helpless in your vain attempts to clutch at what you desire in life.
In suffering from a chronic illness these feelings may be familiar to some. Commonplace, even. To outsiders airing these feelings of often abject misery can be perhaps worrying and a cause for concern because they don't feel the relentlessness of your illness.
In suffering from a chronic illness these feelings may be familiar to some. Commonplace, even. To outsiders airing these feelings of often abject misery can be perhaps worrying and a cause for concern because they don't feel the relentlessness of your illness.
They don't feel the pain all day every day that surges through your body.
They don't experience the uncomfortable and interfering symptoms that you do, and they don't feel physically and mentally exhausted every day in life.
Even on the 'good days' patients will think about their illness; why aren't I pain? What does that twinge mean? What if I need surgery again? What if I need to go to the toilet and can't find it? What if I've forgotten my wet wipes?
I try not to wallow too much in the pain I regularly feel because I'm tired of feeling it and want a break. Also because it's B-O-R-I-N-G to talk about.
I try not to wallow too much in the pain I regularly feel because I'm tired of feeling it and want a break. Also because it's B-O-R-I-N-G to talk about.
Chronic illness isn't fun.
There's no metaphorical finish line to cross because there's no getting better. I don't jump into the air and click my heels together when I get home from yet another hospital visit because I've generally been handed another deluge of information to begin to comprehend, alongside a massive bag of foul-tasting drugs. But enough about my dealer. Kidding Mum! Prescribed drugs, obviously. I don't have a 'dealer'! But if I did I'd like him to be called something like 'Crazy Leroy' and wear loud shirts and shiny brogues.
I digress.
I write often on the mental health issues that can often coincide with chronic illness, from anxiety to depression, as I don't believe it's something to keep quiet about. It's not shameful, or embarrassing to admit you sometimes feel low. It's safe to talk and be open about your feelings because you might not feel safe in yourself by keeping them in.
I often align suffering from IBD with grieving for a loved one. Not to in anyway minimise the horror of losing someone close, but it's apparent to me that the so called 'stages of grief' are startlingly familiar to anyone who has faced the diagnosis of an incurable illness.
Denial, Sadness, anger, depression, acceptance.
I was told last year I should "learn to accept" my disease. How do you go about accepting it exactly? It's not a bunch of flowers. It's an incurable condition I will have to endure for the rest of my life.
I suppose in terms of 'acceptance' I've come to the realisation I'm not going to get better. That's not to say I won't find a treatment to suit, but that I won't wake up one day and find myself Crohn's-free.
Shortly after my diagnosis I felt for a long time that I was looking at my illness through the eyes of everyone else: my parents, family and friends. The man I love.
I'd taken on board all they felt and predicted for my diseased future, and just rolled with it because it was easier. When I'd recount my stories of surgery and hospital visits it would feel like me talking about a friend: difficult to describe I suppose, but I think the mind has a way of closing off certain parts to protect itself; I wasn't physically strong enough to cope with what was happening to me so how could my mind be expected to comprehend such life changing news? The truth is there is no right or wrong way to cope with chronic illness; it's abut finding what fits you, not pushing yourself too hard, not punishing your body and ensuring you aren't bottling your feelings up.
I don't mean to depress or upset, because the majority of the time I personally feel incredibly lucky to have amazing people in my life, for all of you lovely readers, and for the love I have around me. But often I feel sad, and exhausted, and that's when I (and YOU) have to remember that this particular storm will pass. It won't last forever. Even if my disease will.