Motherhood, mental illness and beyond

Posts tagged ‘chronic pain’

Look out pain, I’m coming to get you!

I’ve written about my chronic back pain before; here, here and here.

So after 17 years I had my first meeting with a spinal surgeon this morning. It was a really good meeting, he was lovely and very sympathetic and quite optimistic that finally something can be done. First of all we’re going to try a new, still fairly experimental treatment of antibiotics for 3 months (it was in the news earlier this week, there’s a good article about it here). The surgeon was very excited about trying it (I think I’m his guinea pig!) as it’s supposes to be pretty effective for chronic back pain.

If the antibiotics don’t help then I will be given intravertebral steroid injections (doesn’t that sound fun?). If my levels of pain and mobility still aren’t improving then the surgeon wants to do a double discectomy and spinal fusion (which sound even less fun!). But for now we’ll try the antibiotics and see if there’s any improvement.

I’m feeling more optimistic about my prospects than I have done in years. It’s good to know that there are options I can try and that if one thing doesn’t work it’s not the end of my treatment, merely a step on the path to something else.

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My big fat problem

I was always a very active child – dashing all over the place, climbing trees, cycling, digging holes. I took numerous dance classes including ballet, jazz and contemporary modern. I was a Brownie and then a Girl Guide (as they were known then) and loved the camping, wide games and hikes. In my first couple of years at university I did a lot of extreme sports including skydiving, white water rafting and bungee jumps.

When I was 15 I started getting occasional twinges of pain in my lower back. By 17 I’d had to stop dancing. By 20 I needed to use crutches every now and again. At the age of 23 an MRI showed that I had 2 prolapsed discs in my lumbar spine. I was told that surgery was not an option so I tried all sorts of treatment, from painkillers and pain management clinics to various kinds of physiotherapy and acupuncture. Nothing helped and I was starting to gain weight.

It didn’t bother me too much. I was still fairly mobile and active and although my pain was constant I was able to ignore it most of the time. However as I got older my mobility decreased and my pain increased. By the time I was 26 the only exercise that didn’t exacerbate the pain was swimming and walking. So I did those; I swam twice a week, a mile each time, and walked whenever possible. Still my mobility gradually decreased though, and my girth increased.

I am now 32. I have been diagnosed with degenerative disc disorder; I still have 2 prolapsed discs but now my lumbar vertebrae are calcified as well. I use a walking stick most days or crutches if it’s really bad. And I am obese. Really, properly obese – about 5 stone over a healthy weight (according to BMI). I’m seeing a spinal surgeon next Friday and I know that one if the first things he’ll say is that I need to lose weight (as though anyone could be this fat and not realise!).

But how do you lose a large amount of weight when you can’t exercise? By eating less and eating healthily, of course. But (there always seems to be a but and I feel like I’m just making excuses) I can’t afford lovely healthy food and my mental illness is yet another hurdle. I comfort eat when I am stressed, unhappy, tired or in pain – so a lot. The psychiatrist who recently diagnosed me with cyclothymia and generalised anxiety disorder also said that I am a compulsive binge-eater. I merely nodded my head in agreement – I’ve been like this since childhood.

I know what I need to do. I need to stop bingeing, eat less and try my hardest to exercise when I can. And at night I lay awake plotting how to do this – I’ll only snack on fruit, I’ll eat mints when I get the urge to binge, I’ll stop baking with DD for a while, I’ll really cut down on portion sizes. Hopefully as I lose weight my pain may decrease, allowing me to exercise more.

But the next day I wake up and my first thought (after “Why is my 16 month old blowing raspberries on me at six in the morning?”) is always of food. I think about it all day. I think about what I want to eat, what we actually have to eat, whether I can bake anything today. While writing this I am mentally going through the kitchen cupboards to see if there’s anything I can snack on. I am obsessed with food and I have very little self-control. I know people who can open a packet of biscuits, eat one or two and put the remainder in the cupboard. I admire these people with something akin to awe. Because I can’t – I have one more, and one more, and one more, and then they’re gone. This applies to any junk food – sadly not to anything helpful like fruit!

I know what I need to do but I self-sabotage. You know the cartoons where someone has an angel on one shoulder and a demon on the other? That’s me. I am constantly torn between what I know I should, must and need to do, and what my treacherous bingeing self wants me to do.

I can’t carry on like this. I am in constant pain, I struggle to lift and play with my children, I can’t remember the last time I cuddled up to DH on the sofa because it just hurts too much. I don’t want to have this relationship with food any more but I don’t know how to change. I don’t know how to quell the demon and let the angel win for once. I don’t know how to not be this person.

There are different kinds of pain

Tonight I am feeling both sad and angry. Earlier today my daughter asked me when my back will be better – because when you’re 3 everything gets better eventually, whether it’s a cold, chicken pox or a bumped head. I had to explain to her that my back won’t get better, that I will always have a sore back. “But I don’t want you to be sore any more Mummy!” she cried, and I had to comfort her and tell her that it’s ok, I don’t mind having a sore back.

But I do. Of course I do, no-one enjoys being in pain, let alone chronic 24 hour pain. Yes, the levels vary, and some days I am more mobile and flexible than others. But the pain is always there. Sometimes it’s a dull, nagging pain like a weight dragging me down; sometimes it’s a sharp stabbing pain like white hot lightning. Most days it’s a combination of the two although the intensity varies.

This pain has been a constant companion for almost 17 years now. It has worsened significantly during that time, as degenerative conditions do. And so now I find myself aged 32, with 2 small children, and decreasing mobility. And I am angry.

I feel angry every time I struggle to pick up my 1 year old son and every time I barely manage to pick up my 3 year old daughter. I feel angry every time I have to explain that I can’t get down on the floor to play today because my back is too sore. I feel angry when my husband has to help me up from the sofa or out of the bath; when I struggle to make my bed because the weight of the duvet is too much; when I have to explain to DD yet again that I can’t run with her.

And I feel incandescent with impotent rage every time I see her looking at me with concern in her eyes, every time she tells me that she’s sad I’m sore, every time she gets out her doctor’s kit “to make Mummy better”. She’s only 3 and already I’m letting her down, already she’s learning that her Mummy isn’t the super strong person she needs, that I can’t always be the Mummy she wants me to be, who crawls around the floor and runs outside with her.

Before I had children I thought that there couldn’t be anything that hurt more than my back does on its worst days. I was wrong – this pain in my heart is far harder to bear.

Pain, pain go away…

I first started suffering from back pain in my mid-teens. Initially it was mild and infrequent but it gradually worsened. I tried all kinds of therapies, medications, exercise regimes etc but nothing stopped the pain. Eventually at the age of 23 I was told that I would just have to put up with it, that it was a degenerative condition and I should expect to be using a wheelchair frequently by my early thirties. I was also told not to leave it too long before having children.

I’m now in my early thirties and I’m doing better than expected. I do have a wheelchair but use it very rarely – I use crutches more often but still only a small percentage of the time. Mostly I just hobble around as best I can and stay at home if it gets too bad. However I am in constant pain; if you count 1 as being pain-free and 10 as utter agony then most days I am a 6. Sometimes a 7. Only when my back goes completely (which thankfully doesn’t happen very often) does it reach 10. It still affects my every moment and every movement though. Over the years I’ve become quite good at gritting my teeth and hiding the pain but sometimes it’s impossible.

While there are only a few things that I am completely unable to do (run, dance, walk any real distance etc) the list of things that I can just about do but really shouldn’t (because they increase my pain) seems to grow longer and longer. At the moment it includes:
Picking up my children
Getting things in and out of the fridge/oven/lower cupboards
Sitting on the floor to play with my children
Carrying shopping
Lifting DS in and out of his cot
Walking on uneven ground, including beaches
Walking up or down hills
And so on and so forth.

I refuse to stop playing with and caring for my children. I am very lucky to have a wonderful and supportive husband but I refuse to let him do everything at home. I want to carry on doing all these things right up until I am no longer physically able to. This often exasperates DH. 🙂

Why am I talking about this today? It’s because I saw my consultant this morning and after reviewing my latest MRI he confirmed the diagnosis of degenerative disc disease (I won’t bore you with the specific details). He’s referring me to a surgeon to discuss the possibility of spinal fusion or a discectomy but he’s not optimistic that either procedure will help. Once again I am forced to acknowledge the possibility that I will have worsening chronic pain (and increasingly restricted mobility) for the rest of my life. Every day for another 50, 60, maybe even 70 years.

And worse than that, my ability to play properly with my children is decreasing all the time. There is nothing worse than having to tell your 3 year old that you can’t play with her because you’re too sore. Actually wait, there is – it’s when she doesn’t even ask me to play, but tells me to rest and look after my sore back instead. That hurts most of all.

But I have recently become friends with someone in a similar position and she gives me the anger and fire to fight this instead of merely resigning myself to it. If surgery isn’t an option then I’ll bloody well find something that is. I refuse to just give up. I will beat this.

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