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 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.
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.
I had my appointment with the neuro specialist this morning to get a second opinion about whether I need surgery on my spine.
I had expected this to be an in depth discussion with me maybe pushing for surgery, because the initial letter following my MRI had dismissed surgery as an option.
In fact, my consultant seemed to think that surgery was the obvious option (without pushing that decision onto me).
So now I have 2 different options of what to do next and it all feels a little bit overwhelming.
At one point he asked me what I felt. Have you noticed there’s a nerve that connects your vocal chords and your tear ducts? So often I think I am ok until I try to speak and suddenly my voice breaks or disappears and tears appear instead.
So now I have the choice of opting into surgery, with an 85% chance of it sorting out the worst of my pain and having a relatively normal life afterwards. Albeit still with 3 discs that seem to be degenerating.
With it comes the first glimmer of hope. Also there is the anxiety of choice and the worry of making the right one. There is a moment in the film Doubt (it was on late-ish one night, don’t judge me), where the woman says that she is frightened of every decision – if someone offers her children a lift to school she worries that accepting means the car will crash, but then not accepting and letting them walk could bring its own disaster, and she doesn’t know how to switch that off. It sounds a little extreme, but I know what she means.
I have had many many lovely messages of support this morning, and many asking how I feel.
I think I need to just not speak for a little while. The nerve connecting my voicebox to my tear ducts might kick in.
Helplessness is something you have to learn to deal with when you are in pain all the time. There are things I cannot do. There are things I can do, but they hurt, and so if someone else is around it makes sense to let them do it instead. The list of things I can do that don’t hurt is feeling a little small at the moment.
There are two levels to being helpless; the first is the actual physical limitation on your life, and the second is the emotional impact this has on you. I hadn’t been consciously aware of the emotional impact of being dependent.
The emotional impact is bigger than feeling weepy on occasion. The real shock has come from the erosion of confidence. I still describe myself as a confident person, but I have moments of realising that the things that make me nervous or feel daunted are all things that I would have thought of us small things, or indeed not even given any thought to: such as long car or train journeys, giving my child(ren) a bath, doing bedtime for both children or just running an errand or two that requires getting kids in and out of the car several times.
A close friend said to me recently that I am still new to chronic pain. I am still resisting it. She’s right, I am. Because giving in to it means being the person who is daunted by everyday tasks, giving in to it means accepting that I have to say no to things indefinitely and it means saying goodbye to so much of the me that I really rather like.
I’m not ready to do that yet.
On Friday I have an appointment with the neuro team who will look at whether I need surgery on my spine.
This is making me feel nervous; nervous about potential surgery on my spine and all the risks that go with that and nervous about not having surgery and what that means for living with pain.
I have decided that I need to write down all the things that I need to know, and have wanted to ask over the last couple of years, but every time I sit down with my pen and paper my mind goes blank.
All I can think is: will the pain be forever if I don’t have surgery?
So it turns out that co-codamol turns me into a bit of a bitch.
I have realised that I am feeling consistently more hassled and more annoyed than I used to. I have less patience. I snap at my kids (and others). This adds up to there being many moments throughout the day where I don’t like myself very much.
There is a lot that is tremendously difficult about being in pain all the time, but adding not liking your own personality into the mix makes the mental side a bit too much to deal with. Thankfully one of the people I like most on twitter made the observation that co-codamol makes her feel bitchy and horrible, and I realised I am at my worst when I have been taking it.
It is one of two drugs I have been prescribed.
It doesn’t help with the pain. In fact, I can’t even tell I’ve taken it.
I have decided to stop taking it.