In my lifetime with chronic illness, I don’t think I have ever been blissfully unaware of its existence. That’s not to say it has always dominated – anyone who knows me will vouch for that not being the case. It hasn’t even always been at the forefront of my mind. It’s just that something as big and constant is hard to forget about.
Having spent the majority of the first three decades of my life trying to outrun, hide from, bury, ignore and generally dismiss my Inflammatory Bowel Disease, the realisation that its presence will always be felt is something of a big one.
I can certainly think of things I would rather be woken by at 4 o’clock in the morning, than the griping, spasming abdominal pains that got me up today. It is true that I am more than a little familiar with intense pain, meaning this is nothing new. I should add that there is really no comparison between the pain I sit in right now, and the pain I have been used to in recent years, so I am most certainly not complaining.
Nobody is more aware than me, of how far I have come since being paired with Nelly, or how lucky I am to still be in the race.
If I’m honest, I think that is what I’m struggling with here. When Nelly came along, I thought it would be something of a holiday fling – three months and we’re done. Six months down the line, when I really began to reap the rewards : my weight started to go up and my pain medication came down, I accepted the need for a more lengthy relationship with Nelly. I even learnt to like Nelly (although I never thought I’d befriend my elephant) for the help he had provided.
Now, exactly nine months on, I am feeling frustrated.
I don’t want to sound ungrateful. And I definitely don’t wish to whine. I suppose there is just that little part of me that wonders when it will end. After the initial excitement of hearing the ‘R-word’ back in June, I can’t help wondering what it really counts for.
I still have an NG tube. Calling it Nelly and talking about it positively doesn’t change the fact that it’s there, up-front and centre. I am still battling to get my full daily nutritional quota, starting every day with my ritual liquid feed set-up. I still can’t gain quite enough weight. I am still severely anaemic. I am still struggling to eat three square meals. I still have days where my Crohn’s symptoms shout as loudly as they ever did…
I imagine you get the picture.
Permission to Feel *#@+
For someone like me – someone who has made it their mission always to be sunny, to exude positivity, never to moan – it is not easy to allow myself to accept these dips. If I indulge such overwhelming feelings of negativity, and let myself feel down even momentarily, I am giving in to the disease in a way that I have never wanted to do.
So what’s the answer?
It has taken me three and a half decades to realise the unrealistic expectations I put on myself. I am kind and compassionate with others when they complain about how run down their cold is making them feel. I am patient and sympathetic when people tell me how rough their headache has left them feeling, how hard they are finding the sleepless nights with a new baby or how miserable they are because winter is drawing in.
I give everyone else permission to be human, but I expect something more from myself.
Maybe it is time for me to recognise the fact that with chronic illness, everyday is a fight. Sometimes it is a battle just to get out of bed. Most of the time I can smile on through it all, but even super heroes have off days occasionally.
By wishing things were easier or better or less painful, I am not being ungrateful about how far I have come. Only the other day, Lovelyman and I came out of a hospital appointment musing over comments made this time last year. Failing to thrive and fading away seeming like descriptors of someone other than myself. I count my blessings to have moved on from there everyday.
As I often say, life is anything but black and white.
I think I am entitled to hope for a time when I can answer the question ‘How are you?’ without first making the comparison to how I was. One day it would be lovely simply to say ‘Fine, thanks,’ and really mean it.
For now, though, I will give myself permission to crumble, cry, grumble and even fall apart behind the scenes every once in a while. I will even allow myself the odd tantrum about the injustices of life. However, when the sun comes up and cock crows, I will slap on a smile, put on my best battle gear, sprinkle sunshine and fairy dust and get on with fighting another day.
After all, what other choice is there?