In Permanent Pain
23rd Jan 2013
Pain pain go away please come back another day… just one day without pain would be something I haven’t experienced for over a decade.
One of the hardest things about chronic pain is that only you know how bad the pain feels. Your level of chronic pain can’t be assessed in a scientific test or screening. There’s no physical scale that can show how much you’re suffering. There’s just the pain and of course everyone feels pain differently. Pain is always personal, and this is my story.
I haven’t spoken about my pain to anyone outside of my immediate superiors in work because, being honest, I do have a sense of shame and slight embarrassment about having it. I worry people won’t believe me or think it is all in my head. Sometimes when you are desperately trying so hard to balance everything– for me that’s a weekly radio show, a TV career and my role as a wife and mum – and stay on top of chronic pain, people will doubt that you are genuinely in pain. They might say ‘you look so well’ or ‘how are you doing your job or getting on with life if you really ARE in pain?’
A friend asked me recently ‘So how was your weekend? ‘I answered ‘Very quiet – I just took it easy’. Actually I was
in St Vincent’s hospital- as I regularly am – getting various procedures (injections) to dampen down the nerve pain from ‘Cervical Facet degeneration disease, SIJ dysfunction and coccydynia’.
It’s so annoying that I am in pain and worse when I feel I can’t talk to anyone about it. It can be a lonely – and a different type of painful – place to be. The type of painful that… When you have chronic pain sometimes friends and loved ones just don’t really grasp the fact that this problem is not going away. I know they just want you to get better, but I’m always being asked ‘are you not better yet?’
A big loud NO is the answer.
It was, and still is, hard for me to accept that this pain isn’t going away. I am a very positive person, so I try not to focus on my prognosis and just take every day at a time, but I clearly remember the day I first realized my pain wasn’t going away. I had started my first pain management course in St Vincent’s in Dublin. St. Vincent’s is one of the only centres in Ireland to offer patients a three- week pain-management programme that includes lectures, a fitness programme, an occupational therapy programme and relaxation classes. The outpatient programme is given by a pain doctor, a psychologist, an occupational therapist and aphysiotherapist, and the aim is to help the patient control the pain by using a number of techniques. When my doctor suggested the course I went in believing I was going to be pain free after the 3 weeks. I remember the day so vividly when I realised that this constant condition was not leaving me; I will have this pain forever.
It was day two of my first pain management course; we were having an open question and answer session in the afternoon with one of the doctors. Many questions where being asked, and at the time, I truly believed I was going to get rid of my pain, that there was something the doctors could do, or a tablet I could take that would just make it go away. So I asked something like ‘there has to be something you can do, some operation or procedure. I won’t have this coccyx pain forever – people can’t live with pain like this all the time – I just haven’t been properly diagnosed yet, that’s what’s wrong….this CAN’T be it forever!’
The doctor explained something about the pain gate being opened and that yes people do LIVE with chronic pain and that’s why my doctor referred me to this group.
I honestly felt physically sick, I was shocked. A great sadness overwhelmed me and I got very upset; shortly afterwards the session finished for the afternoon I walked out of the room and I slowly started to cry, but as I walked down the hospital corridor, uncontrollable tears started to roll down my face. A lovely lady from the course walked up to me, put her arms around me and said ‘you will cope with this Andrea, it will be ok’, I just cried like I’ve never cried before, I felt like someone had died, someone very close, my best friend, someone I loved dearly. On this shocking day, a little part of me died. I lost hope and I went into the hospital church, sat in silence and prayed.
Praying and pain go hand in hand for me, I pray everyday that I will see the positives in my life, I feel enormous gratitude for all the blessings in my life and since that day I have accepted pain into my life. I don’t fight it, I don’t like it, but my hope for a cure has been replaced with acceptance. I kind of feel I have to see pain as an old friend. Let me introduce you to my friend of about 18years… her name is Pain… I first met her in my late teens. I had been suffering with back pain and during my twenties I saw many different doctors. I have been tested for endometrioses, PSOC, I have gone to healers all over Ireland, tried Pilates, yoga, every exercise but nothing ever got rid of the pain. Finally after going to the UK I was diagnosed with Spinal stenosis and I was referred to a wonderful doctor in St Vincent’s Hospital called Dr. Paul Murphy. Over the last few years we have worked together to manage the pain, with treatments, tablets, pacing and a variety of wonderful coping mechanisms to help me control it. It often takes a number of different experts working together to help any patient. That could include your GP, a pain specialist, a physical therapist, a psychologist, other specialists — and YOU! The patient is really the most important member of the team. I had to take control of my relationship with my pain and not let it take control of me.
When I have a sudden pain flare-up or dramatic increases in pain levels, which is part of the chronic pain cycle, I now know it will pass and I have realised I have to accept it. But these times can be very scary – for me personally, nothing makes sense because they happen often and out of the blue. I counsel myself that at least I can recognize the signs now, and try to avoid the panic that used to set in before I did all my pain management programmes. Especially during these dark periods of desperate painful spasms and flair ups, I struggle with coping. I have even considered if this pain is all in my head, I have wondered if I am mad. At least that would be an explanation. It’s so hard to understand why my body feeling this high level of pain for no apparent reason. I want to find the reason.
Anyone who knows me understands that I am somebody who believes strongly in positive thinking, that you
can achieve anything you want if you believe it and work hard, focus, keep your goal in mind and be positive. So I ask myself, what am I doing wrong? Why am I in constant pain?
I find keeping a diary helps and although I might be in great pain, after I have written about my feelings – no matter how desperate or depressed those feelings are – I always end by writing ‘tomorrow I will feel healthy, pain free, happy & fit.’
My experience is that people in general don’t understand chronic pain, but it is a long-term, complex condition, which affects tens of millions of people worldwide. There is a perception that people with chronic pain can’t or don’t want to work. But like myself and many of the people I met on the pain management course, we are just as ambitious and productive as other employees – we just need more education and understanding in society about the condition we live with, so that we can be facilitated by employers who will benefit, while we cope with the pain.
One of the words I have taken from my experience is ‘pace’. I need to pace myself, set realistic goals
about what my body can do and try to stay positive. I shouldn’t feel limited by my chronic pain condition, it’s an ongoing struggle for me but I take things day by day.
Chronic pain is not a symptom. It is a disease in its own right. It should be treated with the same urgency as any other similar chronic condition. My hope is that someday this will happen and that the medical world will come up with some ‘test’ so finally people with chronic pain can feel validated. This will empower them, reassure them that they aren’t mad or imagining the pain, and give them the words to get the right support from doctors, family members and society that they need and deserve.