I had my first appointment at the pain management clinic this morning. They hadn’t been told yet that I’ve opted for surgery to try and sort the worst of the pain out, so it was a bit of a different appointment to the one they expected to have with me.
In part it was brilliant. It felt like there was a team of people taking me seriously. They consider not just the pain itself, but the impact on every part of my life, physically and emotionally.
It feels surprisingly difficult to spend any time considering the impact that chronic pain has on your life and your emotions. You become adept at just getting through the day. You don’t dwell on how exhausted you are and you try to find different reasons for your 4 year old than ‘my back hurts’ to not do something, so that she can hear a different excuse / reason once in a while. To focus on the impact, to think about the things you are missing out on and to list those, and to list the hopes of how life will change is a tough exercise. Painful in an entirely different way.
It also made me feel the fear. Talking about the amount of pain I am still likely to have made me frightened that the operation won’t work, or won’t work enough, and this evening it’s sent my mind freewheeling. Here are some things I am frightened of:
What if it doesn’t work?
What if it doesn’t work?
What if it doesn’t work?
Can my emotions cope if it doesn’t work?
What if I wake up during surgery?
What if something goes wrong during surgery?
What if it doesn’t work?
I was trying to get to sleep last night and it occurred to me that it’s the end of August. On the 20th of August last year, my 3 month old baby started having seizures and I spent a week in hospital with her. She had many tests, some of them awful. I count that week as one of the worst in my life.
My brain usually remembers anniversaries for me, without me even trying. The fact that the week slipped by unnoticed by me feels like a big deal. There is a luxury in being able to forget, in not dwelling on the past. She is a bright, bossy, brilliant, funny, clever and interesting 1 year old to be around. She kept me focussed on the present, and I felt very lucky to have not remembered.
I have noticed that I can often deal with quite big things. I can hold it together for an astonishing amount of time when I have to, only to be undone by something tiny. Here is a list of some of the things that have had me sobbing and reaching for the tissues:
Dropping my hot water bottle and spilling boiling water all over the floor. Not on me, not on my kids. Just on the floor. (It’s also a very ugly floor, so genuinely does not matter at all).
Running out of bread for toast, (or rather, discovering the bread that I planned to toast for breakfast was mouldy).
Dropping my phone charger and having to get down on my knees to pick it up again.
My daughter and I spilling a full glass of milk in a bizarre double act of clumsiness that would have looked very funny to an onlooker.
My doctor telling me she thinks I am brave.
Forgetting something upstairs.
My mum giving me a hug.
I took my 4yo shoe shopping today. In the Trafford Centre during the school holidays. *That* was a stupid idea. But, given we need a school uniform (that’s a whole different post), and given she seems to be in the middle of a growth spurt, it was necessary.
We started off by having her feet measured. Clarks have this odd i-pad type device that slots into the measuring machine to do the measuring. She could put her gender and her age into the machine too (I’m not quite sure why). On the screen was a boy (Jack) in blue, and a girl (Daisy) in pink. My 4yo asked why there were two people on it. Our sales assistant instantly said ‘so you can put in you’re a girl. You wouldn’t want to be a boy would you?’ with negative emphasis placed on ‘boy’.
She chose the blue; ‘because I like blue’.
This pleased me so much. Not because I don’t want her to like pink. She can have all the pink she likes. And last week she couldn’t get enough of pink and purple. This week she loves blue (but only light blue), yellow and green. I just love the fact that she didn’t get squashed into choosing what she thought she should, based on the adult’s influence.
It continued. She tried on a pair of shoes, and immediately said they were too tight. Sales assistant said ‘but they look so pretty’. Later we had ‘but they have a loveheart on the front’. She’s 4 for heaven’s sake, what’s a loveheart got to do with anything?
She stuck to her guns, and we got a pair of shoes that fit her and are comfortable.
I hope that I can continue to foster that independence as she grows up, even when she has grown ups and peers around her who try to narrow her options.
Was there ever a more futile instruction?
I understand the desperate need to keep control over possible disappointment, and when your mental health feels like it is teetering on the brink, there is a feeling that disappointment would tip you over the edge (crikey, shall we play cliche bingo?). The trouble (or good thing) is, that you can’t switch off hope on demand. Disappointment can break you regardless of whether you think you’ve kept your hopes low.
Now that I have booked in for surgery I find myself thinking about when I am better, when I have had the op and when I have done all my walking and got fit and can lift my children again. I am imagining Christmas without pain. I realised yesterday that this has rubbed off on my 4yo when she began a sentence with ‘mummy, when you’re better…’
This kind of hope feels a little dangerous. I know that I will still have back pain, because the surgery can only fix one problem and I will still need the pain clinic to help me manage the other. However, it should fix the main part of the pain. I should be able to hoola hoop, and lift my children into swings on the playground and sit on the floor cross-legged to play.
There is a niggle at the back of my mind that says ‘what if it doesn’t work? What if it goes wrong?’ that I can’t quite switch off.
Don’t get your hopes up? Presumably we wouldn’t ever take a risk if we didn’t also hope.
Today I read a news article on the BBC website.
Yet another article that suggests there is a difference between ‘rape’ and ‘rape rape’. And yet another article suggesting that the victim is to blame in her abuse. That’s right, a 69 year old man tells us that a girl under the age of consent can be to blame for her own abuse.
This is just the latest article / occasion in recent months when victim blaming has been so prominent and blatant that it makes your jaw drop. We’ve had comments from top lawyers suggesting we stop demonising our older men, we’ve had barristers and judges tell courtrooms that an under-age girl was predatory and that this should be taken into consideration when sentencing.
No, actually, it shouldn’t. There is a well-known phrase that we would do well to remember: The age of consent. Two words here give us a clue as to what should be taken into consideration: ‘age’ and ‘consent’. Under the age of 16 a child cannot give consent. It is up to the adult not to abuse the child. It is up to us not to help legitimise the abuse and blame the victim when it happens.
My recently turned 4yo has acquired a hoola hoop. It is sparkly and pink and makes a rattling sound as it spins round and she adores it. She has used it as a skipping rope, as pirate’s treasure, an island and all sorts of other things besides. She has not hoola hooped with it yet.
I would so love to be able to show her. I used to be very good at hoola hooping. Trying to explain how a hoola hoop works without showing someone is a bit crap (I think this is what’s known as the classic British understatement). So I came up with a plan.
I showed her how it works on my arm instead of round my waist.
She was thrilled. She now demands that I hoola hoop on my arm and wishes me to carry on doing this for far longer than my arm muscles can manage.
It feels rather nice to have impressed her with a physical movement – albeit not one that I had intended.