As well as living with my husband, my daughter, my three cats and 12 pond fish, I also live with a chronic back condition, who for the purposes of this piece, I am going to call Susan. (I’ve no idea why, it was the first name that came to me when I decided to finally give her a name!!)
I first became starkly aware that Susan had moved in when I was 26 and awoke one morning barely able to move without experiencing severe pain and having to call for my landlady to help me get up and dressed and get to the GP. I remember feeling such shame that I had to ask her and then the GP to put on my socks and shoes because I just couldn’t do it… my body had completely let me down.
From there on, Susan would show up 3 or 4 times a year either in the form of an inflamed or herniated disc in my lower back, creating havoc for a couple of weeks and then, high from whatever medication the GP would prescribe, would soften back until the next time. Susan is a real attention seeker, and when she rolls into town, she demands that I take notice.
Over the 32 years that Susan has been living with me, I have done everything in my power to keep her at bay… in fact, in 2000, I tried to cut her out of my life altogether, literally, by having spinal surgery, but alas, this turned out to only be a 10 -year separation and she returned all guns blazing in 2010.
And then in 2015, Susan decided that she clearly wasn’t getting enough attention and acted out in the form of a sequestered disc (google it, it makes me feel too nauseous to explain). Not only was I unable to move without experiencing lower back pain and muscle spasms (I had to use a wheelchair for 5 months because I could barely stand), but I also had constant sciatic nerve pain all down my right leg and no feeling in my big toe – it actually felt like I had a knife that was being twisted just above my right ankle for 8 months. And the medication… there was lots of strong stuff that took months and months to really work.
I was offered the opportunity to try to cut Susan out of my life again (well at least to lock her in so she couldn’t get out again), in the form of surgery to fuse my lower spine. But it was risky because of the scars from the trial separation 15 years earlier.
Therefore, I decided first to try a gentler route and opted for some amazing chiropractic rehabilitation which, along with the pain meds, slowly but surely got me back on my feet and moving again unaided… and after 10 months of bloody-minded determination on my part, Susan gave up trying to take over my life, calmed right down and I opted to not have the surgery and let Susan stay. Since the beginning of 2017, I began to invest in a personal trainer to rebuild and then maintain my strength and mobility and to keep Susan at bay. I still have at least one session a week now.
I, Helen, am very different to Susan. I am not one who likes to take up space or seek attention and unless you know me very well, it is unlikely that you would know, until now, that Susan is even a part of my life. When I was bedridden in 2015, I still attended work meetings via Skype, but with the camera off, so folks wouldn’t know I was in bed. I facilitated workshops, travelling hundreds of miles (amazingly, Susan didn’t stop me from driving, her one saving grace!!) and using a walking stick to get from the car to the nearest chair. I did not tell people about the chronic pain. I was terrified that folk would think that I wasn’t able to do my job anymore if they knew and as someone whose worth, at the time, was almost entirely derived from my work, that was unthinkable.
I bought a wheeled saddle stool (I saw a barber using one) so that I could still cook meals, host dinner parties and numerous Christmas gatherings, whizzing around the kitchen refusing any offers of help, proving my worth to my family and friends in spite of Susan.
I also began caring for my best friend who had terminal cancer and although I know I would have done this anyway, I also know that there were times when I was in a lot of pain and should have been resting, but I how could I put my own needs before hers when she was so unwell… I mean, I had to find some way to prove to myself that I was not totally useless, right?!
It is only recently, when I asked my dear friend, business partner (check out https://ansuzaction.org.uk) and amazing coach Ruth Parkinson to help me to look at my longstanding, challenging relationship with food and my weight, that I have realised how little notice I have taken of my story of Susan, (the story I tell of my back condition) and the meaning I have made about her being in my life.
In an a-ha moment in that conversation with Ruth, I realised that I was seeing my back condition and all it brings as part of the essence of me – the disappointment that my body has let me down translates to a belief that I am totally f*cking useless (yes there is a part of me, an inner voice, that really is that harsh!). And then there is the resentment, that voice that says, ‘why me? This is so unfair!’
My challenging relationship with food and weight began when Susan moved into my life and I use it to try to control Susan, to keep her quiet and to stop the loud and painful entrances she makes when she is lacking attention. Even the personal training, which I love, until that point, was all about me proving that my body is not broken and it can do difficult things like lift heavy weights.
And when we were talking it was Ruth who pointed out that I don’t make a fuss about Susan or about the pain I experience, and that I could probably write a book about living with a chronic back condition.
And then something happened today that made me think it was time, not to write a book, but to open up about Susan, and since I am also participating in a writing challenge, it seemed too good an opportunity to miss.
So, it all began when Susan demanded my attention again at the end of February this year, in the form of severe sciatic nerve pain.
At that point, I hadn’t externalised Susan, and so that inner part of me, who speaks with such a cruel and critical voice, began to chastise me for not taking enough care, for not being light enough and for putting extra pressure on my spine, as well as reminding me how useless I was to let my lack of attention to form while swinging a kettlebell, meaning that I now couldn’t exercise because of the pain. That voice was loud and frequent and made me feel like shit!
I have not told many people about the hot, wicked pain that has been all-consuming (8/10 most of the time) and the nerve pain medication that has robbed me of any lasting concentration, whilst seeming to take forever to quell the pain. It has taken all I have to sit at the laptop, focus on conversations, and be nice to people, when all I have really want to do was shout, cry or scream (often all three at the same time).
I have not talked about how I have been full of resentment that this had happened to me again, with a belief that I could have done more to stop it. I have cussed and cried in my personal training sessions when, the pain has stopped me from doing movements and exercises I could do easily before… the simplest of movements, like sitting on the floor with your legs out straight… luckily my personal trainer, James Beeson, is a super star who totally gets me, and Susan, and is very skilled at finding alternative things for me to do in a pain-free range.
But in the middle of all of this, and because of the support from Ruth and James, my narrative has completely changed. I have realised that I am not my back condition, but I am someone who lives with a back condition, who today I’ve named Susan. The retelling of this story has enabled me to make peace with Susan, and, more importantly, to listen to her and ask her what she needs, rather than battling her and beating myself up for somehow being less. If Susan doesn’t want to do a Jefferson Curl, because it hurts, so what? There are plenty more movements I can do. The expectation I used to have of my body has shifted, and I have uncovered a kinder voice that speaks to me when Susan says, ‘don’t do that move, it’ll hurt’. This compassionate voice tells me “Its ok, you’ll get there. Just be patient and listen to your body. Trust yourself – you know what you are doing. Neither you nor Susan have done anything wrong – this situation just is”.
I really think this has made the world of difference both emotionally and physically.
Now, the sciatic pain is no longer constant. When it does show up, it is just a twinge. I have halved the dose of the medication and I’m working towards coming off it altogether. I feel like I am getting my focus and clarity of thinking back and my energy is not being sapped by chronic pain. I have not weighed myself for over a month and that has created a shift in my relationship with food. I am more at ease with myself and with my body and I accept that Susan is part of my life but is not in control of my life.
And finally to today, when, during my personal training session, I dead lifted a 50 kg barbell for the first time in a very long time. It’s not the heaviest I have ever lifted, but I’m good with that. The key for me was that I lifted in the knowledge that if it didn’t happen, i.e. if Susan popped up and said no, then nothing was wrong, it just wasn’t the right time.
I lifted with confidence not just once but six times! I am overjoyed, and to celebrate I thought it was time that I took up some space (quite a lot judging by the length of this piece), sought some attention, and told the re-story of living with a chronic back condition.
Thank you for your attention 😊
2 replies on “On noticing the narrative of a chronic back condition”
What a great story. I really like the idea of separating your ‘self’ from your mind and body. I myself have a lacking posterior chain, and that’s caused some lower back problems too. Some strengthening exercises have been helpful, and deadlifts are one of them. Another lovely post to read. Thanks for sharing!
Thank you Helen, you are brave and your strength of character on this journey of yours has shown me the next step. I am learning and changing and you are there encouraging and guiding with your knowledge, compassionate understanding and experience. Life coaching from you is the best thing I have ever done for myself.