Living with a chronic illness, particularly one which is badly managed or in my case not managed at all, is tough. It’s a rollercoaster of emotions not only from day to day, but from hour to hour. There are days when I’m upbeat, positive and glad to be alive and days where I am overwhelmed, exhausted with the struggle and could slit my wrists because I just want the suffering to stop. But how would I really feel if my life were to end?
This week a woman in my village has been told she has a grade IV brain tumour. It’s inoperable and has spread. She is 44 years old, with a gorgeous husband and 2 school-age kids. She runs a multi-million pound business, has a beautiful home and everything most people would want in life. I can’t image what she must be going through to know she probably has less than a year to live.
Another woman in her early fifties in my village has been battling cancer for 5 years now. Started on her ovary and has spread to her liver and bowel. She’s had half a dozen surgeries and two rounds of chemo. We often meet when out with our dogs and she’s a down to earth, chatty, friendly lady who drives a wagon for a living. She loves her life yet knows that it could be cut short at any time.
When I’m having a bad day and life seems unbearable I try to make myself focus on what it would be like if my life really did end. How would I feel about my suffering then? Would I ignore it more and focus on the sunset, or the sound of the birds singing, or the feel of my beloved Bertie snuggled up next to me? Of course I would and I do. No matter how crap I feel if it’s at all humanly possible I try to fill my days with fun, purpose and appreciation because if I knew this were my last week on earth I’d feel all of those things.
It’s a cliché, and if I’m honest clichés annoy the shit out of me, but it’s not our situation which defines us. It’s our reaction to the situation. We all have it within us to wallow in self pity and it’s fine to do that now and again when things are really bad. But it’s no way to live.
I get incredibly frustrated with my Mum and her self-pitying alcoholism. Yes, I know she’s ill – join the fucking club. Two of her sisters and her brother have all died from cancer in recent years. They’d give anything to still be alive, to be with their children and grand-children, to feel the sun on their face. If they were given their lives over again they wouldn’t spend it sat on their arse drunk in front of the telly day in day out. I want to shake her, I really do, and bite my tongue every day at her lack of appreciation for her life.
I fill my days. I help other people. I crochet clothing and blankets for AIDS orphans in Africa. I visit my recently widowed neighbour every week without fail. I see my parents 4 days a week and just about run their lives. I produce a Church newsletter every month as a volunteer from my bed. I blog and connect with you generous, wonderful, caring people. I potter about in my garden. I absolutely love my photography and take pictures every single day, even if it’s just of the birds through my bedroom window – it connects me to nature and my surroundings.
None of this is without consequence. I’m sure my body would whinge less if I stayed in bed and did none of these things. I pulled a few weeds out of my garden borders yesterday and spent the evening slathered in Ibuleve gel and propped up by 2 hot water bottles because my back felt like it was snapping in two. I also felt so nauseous I couldn’t eat my tea and every time I lay down the room spun. But today is another day. I shall wear my TENS machine and put on my back brace and ignore my back pain, which will not dictate my day any more than it absolutely has to.
My life is challenging, exhausting, hard and painful but it still is life and I intend to seize my days by the scruff of the neck with both hands and shake the living daylights out of them. Nothing else makes sense.