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.
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
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.