Information V Knowledge

I have thought for some time that information is overrated. You often hear that information has been passed on; ‘I told you about that’, ‘we posted leaflets about that’, ‘we gave you a flyer about it’ and so on. Yet information is irrelevant unless it comes with understanding. It is understanding that transforms information into knowledge. 

I’m on week 2 of the pain management course. I can’t say that I’m enjoying it, but I am finding it satisfying. It doesn’t feel like I am receiving a great deal of new information, but I am finding that I am filling gaps in my knowledge. Most importantly however, I feel the immersion in the information I am being given is ensuring that understanding follows, and that there is enough space in terms of time and emotion to use that knowledge to break patterns of behaviour. 

I recognise that I have been given some of this information before and found it interesting. i also recognise that beyond finding it interesting I haven’t done anything with it. The course is not about cramming us full of interesting facts. It’s about making sure that we use that to change how we react and how we prepare. It is in rewriting my habits that I feel the course will be most beneficial. The information handouts are just an added bonus. 

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Back, back, forth and forth

I’m on the pain management programme this month. I am hoping this will give me tools and techniques to cope better with the pain that I still have. 

I had a flare up a few weeks ago, which ended with me sobbing in a Bed and Breakfast, because I couldn’t dance at a wedding I was at. Every time I have a flare up it feels so demoralising. When it ruins an event I have been planning and looking forward to it feels cruel.

I have completed 2 full days of the pain management course. We’ve talked about the difference between acute pain and chronic pain, why chronic pain occurs, the difference between hurt and harm, talked about the impact and psychology of pain, the pacing of life to cope better with good and bad days.

Objectively, a lot of the information is fascinating.

Subjectively, I’m hoping it’ll help me build my resilience to the pain; emotionally and physically.  

The Confidence to Forget Myself

I have been thinking about my body for a while.

Physically, my body has made it pretty hard for me to forget it over the past few years. It’s that feeling when you have tonsillitis and you realise how often you swallow and you wish you could go back to not noticing.

I also saw quite a lovely photo blog recently from a mum who photographed herself with her slightly bulging tummy and stretch marks and said she refuses to feel negatively about them as all the while she was trying for a baby she would have given anything to have said indicators of motherhood.

A third point: I was with a friend recently and we were talking about how our bodies have changed and she said something along the lines of wishing she could tell her younger self to feel more confident in her appearance as she would now give much to look like that again.

And there’s the crux of it. It doesn’t really matter what you look like, the confidence to forget about yourself is a luxury. There’s a multi-million pound beauty industry that works daily to ensure we don’t forget ourselves. There’s make-up and diet fads to sell to us after all.

Pain does not allow me to forget my body. Even on a good day I don’t have the confidence to break into a run for the bus. To jump up and down in the playground with my children. Sometimes the fear of the pain is as inhibiting as the pain itself.

 

My Body, Our Life

It’s been nearly 3 weeks since my operation. Initially I felt quite good. The sharp shooting pain had gone, I am doing more walking. The last 2 days have been harder. I am hurting a fair amount – my leg is aching (travelling down from my back and hip), standing is hard work. 

I have to remind myself that there is still swelling from the operation, that you can’t compress a nerve for 2 years and then expect it to bounce back in 3 weeks and basically just to be patient. I am being diligent about my physio exercises and going out walking every day. I am not lifting, or twisting or bending. I am not playing with or cuddling my children enough, I am not standing up or sitting for long – in short I am doing everything the surgeon and team told me to, to help my recovery.  I also had a good sob this morning when it all felt a bit overwhelming.

Lovely people are asking me how I am doing and how my recovery is going. It is really nice to know how much people (both people I know, and also strangers) are rooting for me. But I don’t really know the answer yet. I can’t seem to fit my emotions or my physical recovery into a ‘crap’ or a ‘fine’,  they seem to be sitting in between the two and waiting to see what happens. 

Being this diligent isn’t possible without masses of help. Family members giving up time to come and stay; to play with the kids, to do the lifting, the driving, the cooking the cleaning… My husband to be on hand even more than usual and to bear the brunt of the parenting, the family life, the money earning. It’s hard work all round. 

I’m being asked a lot how I am doing. I’m not sure how often people ask him how he’s doing. I know his primary concern is for me, but it’s not just about me. It’s my body and I have to go through the surgery, the recovery and the pain, but it’s our life as a family and the effects go beyond just me. 

Mummy, Will You Play With Me?

I have become adept at playing while sitting or lying down. 

Did you know that you have a Handosaurus? In fact, I have 2, and my 4yo has 2, which makes a whole family. To play you simply need to ‘walk’ your hand across a surface, making sure you keep your middle or index finger up in the air to be the head. Then you do silly voices. You can role play in this way for really quite a long time. 

I also have a finger pirate. He (or she) takes a little more work as you need to draw a face on your finger (don’t forget the eye-patch) and then speak in pirate: ‘ha-haaar me hearties, there be buried treasure here!’ and then off she goes around the room to look for whatever item you decide is the treasure (it does help if your house is not too tidy).  

We can play verbal hide and seek too. I close my eyes, she hides. I then remain lying down and wonder loudly where she might be. I suggest places and if she is silent she is not there. If she giggles I have found her. And start again. I now count in German so that she will at the very least be able to count to ten in another language. Educational and fun, see? 

The trouble is (it’s confession time), I often find playing rather boring. Even if I hit upon some ingenious playing ideas (as you can see from the above, I’m quite the expert), after ten rounds of it in 10 minutes I get a bit bored. The 10th time I am the prince wondering who the princess is who has left me a slipper in my bed I want to do something else. My 4yo is rarely ready to move on when I am, and so the tough part is often not the sitting or lying down restriction but my brain, and trying to make myself sound enthusiastic and play the game for as long as she wants to, rather than as long (short) as I want to.

I don’t think I am alone in this. I see it all the time at museums that kids are playing happily and are completely absorbed and the parent or carer is attempting to move them on to the next incredibly exciting thing. I have often wondered why parents do this when their child is clearly so happy in the activity they have been taken to, but it is hard switching off your needs and focussing just on the child. And this is before we get to balancing 2 childrens’ needs at the same time. 

 

The Risk of Paralysis

So Thursday’s overwhelmy day ended  with me coming home to find a letter from the hospital. 

“We are reviewing our processes around how we send letters…It has been drawn to our attention that the enclosed letter may not have been sent to you…please accept our sincere apologies.”

The enclosed letter had not been sent to me. It was from my surgeon summarising our meeting. 

“I have indicated to her that there are risks, which I have quantified at about 1.5% to include infection, haemorrhage, bladder and bowel dysfunction as well as paralysis. She understands that there is no guarantee that surgery will work and in particular there is no guarantee at all that it will help her back pain.”

Not the letter I wanted to receive that evening (or ever). 

I know that every surgery carries risks. I know that they are small. I also know they are severe. I also know that there are unspoken risks, such as my emotional reaction if it doesn’t work or goes wrong. 

As the surgery date gets closer, I find I am having to consciously not think about it too much so that I don’t cry. I am glad that I have organised so many of the practicalities further in advance so that I don’t have to think about them now. I find myself wondering if I am doing the right thing, and yet when I think about not doing it I feel almost more panicky, because although the pregabalin is keeping the pain under control, it is still always there and there is too much I can’t do. 

So I’ll take the risk, but try not to think about it too much. 

Up, Down, Twist, Lean Over, Bend, Repeat

Today is an overwhelmy sort of day. It’s 8.40am and already I feel there are about 6 blog posts I could write, all with a different focus. So if I get my act together there may be 6 different posts by the weekend. 

I have been lucky for a couple of weeks. The pain has been manageable. I feel like the pregabalin has kicked in properly and I can move, walk for 10 – 15 minutes at a time without wanting to cry, I have managed my 4yo’s start at school without needing my crutches, and I have been able to manage the 2 childrens’ bedtime on my own, (bathtime is still too much unless they seriously need hosing down). 

This has made me wonder whether this is what it will be like after the surgery. The pain management clinic has warned me about the 2 things wrong with my back and surgery only fixing one of them. The twinging, stabbing, shooting pain will go – though that is precisely what has been dampened. Is this as good as it will get but without the drugs? Or will I be better than this? It’s an overwhelmy sort of question at the best of times. 

This morning I was rushing too much. Aware that I had not got enough work done yet over the last couple of weeks for my handover before the surgery, needing to dress smartly for a presentation later, needing to get my clingy 1yo to nursery etc. I sat to put my clothes on and suddenly, sharply gasped with the pain. I had forgotten to be careful about my movements. 

I feel like I’m holding myself together, but only just. I was undone by the drop off at nursery for my 1yo. She’s struggling a lot with not having my 4yo there with her. She doesn’t understand the change. 

Getting her to the breakfast table meant leaning over to undo her car seat, bending to get her out of the car seat, lifting her and carrying her into nursery, bending, twisting and lifting again to get the car seat into the nursery so that my husband can do the pick up. Then kneeling down by the children’s table, unable to put clinging, heavy 1yo into her seat to eat.  I sat and cuddled her for far longer than I normally do.  When she looked at me in distress and burst into tears, so did I. 

I did finally manage to leave her and drive to work. I popped into the shop on the way to get breakfast and lunch. I decided to have cheese and cucumber rolls for lunch. When I spotted the cucumber on the bottom shelf my heart just sank. 

An overwhelmy sort of day.