Pain. We all feel it, be in a physical pain in our shoulders, arms, legs, ankles, all of these, or in muscles, or joints… We might try everything to get rid of it; from a warm bath, rest, sleep. medications, be they over the counter or prescription ones, but sometimes nothing helps. Even if we take things to block the feelings of pain it may still persist… over days, weeks, perhaps months, or even years in some cases.
Unfortunately, it is this latter category in which I find myself for the past 3 years or longer, having endured chronic lower back pain since my teens. It all started with a back problem stemming from how heavy my schoolbag was. Said bag was once weighed by the head of support for students with extra learning needs or a disability. I think it weighed about 3 stone… At the time, being relatively slim it would have been about a third of my body weight.
Never did I imagine that so m e sixteen years later that same pain would persist. I was always susceptible to musculoskeletal pain anyway due to my cerebral palsy (CP). Cerebral Palsy is the medical term for a number of disorders and means ‘brain paralysis’, affecting each person very differently. I’d always just assumed that because my walking was wonky, I might end up with damage to my body, especially since my diagnosis was that CP affect both legs from my hips to the tips of my feet. A physio said the pain is likely down to doing everyday things differently just to get by, and it was bound to tell on my body. (MRI Scans last year failed to pinpoint specific causes). I digress, back to the story…
Determined to achieve as much as possible despite my CP, (and many more problems besides) since school I’ve achieved two Arts degrees, one a Bachelor, the other a Masters, and passed a couple of further education exams in Counselling Skills, as well as doing a couple of guest lectures in what it was like to grow up being labelled as ‘Special Needs’, despite unexpectedly progressing through high school to University and beyond.
I have no idea when pain first began to push its way through into more than a niggle on a daily basis. Perhaps at University, when I first needed a mobility scooter, or when trips to the bathroom become ever more frequent and increasingly painful.
8 years ago, I began to require more physiotherapy, and eventually a three-wheeled walking frame. This took some getting used to, having been able to walk relatively unaided since the age of six, except perhaps for the borrowing of an arm or two. Despite the strangeness at first, and the increasing challenges I faced each day, I carried on managing with my walking frame and the occasional use of a manual self-propelling wheelchair until roughly age 28.
One day, I wheeled myself into a consultant’s room for what I assumed was a routine appointment and left in turmoil. Due to pain of increasing severity becoming the norm on at least a daily basis, walking was apparently no longer an option. Months of assessments followed until one day, my shiny new electric wheelchair arrived. It was now the beginning of a more painless future. Or so I’d hoped. Several medication changes have made a bit of a difference to one type of pain, and then another have been necessary to try to block a newer kind of pain.
Warm-water based exercises weekly used to stretch, strengthen and condition my aged body, but I’ve since moved to an area where Hydrotherapy is not available. I did start on new pain patches which helps, but I always have some pain.
There is little doubt my pain is chronic. Chronic pain is continuous, long-term pain of more than 12 weeks or after the time that healing would have been thought to have occurred in pain after trauma or surgery.
British Pain Society, 2015 http://britishpsinsociety.org
Different sites Inc. the one above estimate between 10-14 million people in UK live with chronic pain. Ouch!
This is the pain about paiaon.
To collapse into bed at the end of one painful day only to struggle to find a comfortable sleeping position for any length of time, and the pain to continue all night long and be with me into the new day too. The pain about pain is its sheer persistence. It doesn’t care who falls victim to it, or what one’s plans are, or what problems it exacerbates.
The day one or all meds stop working is a day I pray will never come, though I know it’s possible. I’ve begun physiotherapy again, with the aim initially of becoming stronger and fitter for an upcoming major surgery,. “elective” for the first time in my life. Really I have no choice about it, just planned, as opposed to being a emergency.
I’m aware many are in a worse situation than me, have no access to clean water, food or shelter, never mind pain relieving medication, antibiotics or appliances such as stoma bags.
Equally, there are many who never need to give pain a thought save perhaps the occasional headache. For those who battle pain day in, day out I feel solidarity with, but wonder how we continue to fight each day.
Emotional and psychological problems add to the burden
At least 1 in 4 in the UK battle psychological and emotional pain in the form of one or more mental illness. While I don’t have a mental illness as such, I do have Reactive Depression, a result of living in so much pain for so long, not to mention the emotional and psychological chaos that comes with constantly managing all that comes with it.
Stay tuned for the next in my series of posts on pain, on depression and loss.