The Persistence of Pain

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 now find myself, 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 some 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.

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 became ever more frequent and increasingly painful (more of than on World IBD Day (19th May).

Some six or seven 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 for managing with my walking frame and the occasional use of a manual self-propelling wheelchair until the age of about 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 medications 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. Successive appointments with different doctors followed, and for a time I was reasonably comfortable. 

However, this is now no longer the case. Most of the time, medications, microwave heated (wheat bag) animals and hot showers make a bit of a difference along with warm-water based exercises weekly but nothing really helps to the point of being in no pain at all. Those days have gone. 

Take today for example. Waking up to buzz my carer into my flat, only to realise once she flicked on the light switch that I was in agony from one side of my forehead to the other, and from one shoulder to the other, and in-between my shoulder blades, aching in the middle and culminating in some of the most intense lower back pain I’ve felt. It was time for emergency pain meds. Never one to admit defeat if I can help it I carried on with my day, seeing a good friend for a cuppa, only to crawl back into bed at lunchtime and stay there the majority of the afternoon. My bedtime is now fast approaching just as the lower back pain is increasing all over again. 

I’m aware many are in a worse situation than me, have no access to clean water, food and shelter, never mind medication. 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. 

This is the pain about pain. 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. 

Thankfully, I know One who felt more pain than I will ever feel. One day my pain will cease and all I will know is perfect joy and perfect peace. Not I the centre, but He. Until that time I push on, not in my strength but with His power. Pain pulls my focus back onto myself. What I’m feeling, what I need, my ruined plans, rather than His purpose. Tomorrow is a new day. Regardless of the persistence of pain, I will wheel on beside the One who endured it all for me.

CP awareness month, (in the USA)

A lot of the blogs I follow are based in the US or Canada, especially if they are written by other people with cerebral palsy. Of these, Babbles from Brooke is my very favourite. It is through reading these blogs that I learned March is Cerebral Palsy (CP) awareness month. As far as I am aware, there is no such month in the UK. I wonder if it would make any difference to Government policy if there was?! 

I’m often asked what cerebral palsy is, whether by nursing students, carers, or even new friends. I was reading through some CP-specific blogs and came across this info-graphic which the writer gave permission to share as long as the info-graphic was posted in its entirety.

Image
The image shows which types of cerebral pasly (CP) affects which parts of the body. The first image shows ‘Monoplegic CP which affects one limb. The second image shows ‘hemeplegic CP’ which affects one side of the body. The third image shows ‘diplegic’ (CP) which affects either the legs or the arms, and finally the fourth image shows ‘quadriplegic’ cerebral palsy which affects all four limbs. Here’s the link to the original post by ‘Fork. Needle. Pen’: http://forkneedlepen.àwordpress.com/2013/03/19/types-of-cerebral-palsy-infographic/

 

I’ve seen a statement on a blog which claimed the CP does not worsen over time. However, new research shows that the symptoms of cerebral palsy can worsen over time. This doesn’t happen to everybody, but it has happened to me. I first heard about this from a friend, because it happened to her friends. Some aspects of the medical profession now also subscribe to this belief. If the symptoms of cerebral palsy worsen, it can often happen between the ages of 28-30. In my case, because I have near enough always walked have damaged my joints enough to be in constant chronic pain, for which I have a cocktail of medication. Eventually it got to the stage where I could no longer support constant walking, and a rehab consultant told me I would need to use an electric wheelchair full-time  or else I would need to be hoisted in and out of said chair in 2 years time if I continued to walk the way I was. This was something of a shock.

It has been compounded by my being unable to drive. When I was assessed by an Occupational therapist (OT) by a variety of tests including identifying signs, using a driving simulator and the infamous block test which tests spatial awareness, or in my case the lack of it. Apparently my reaction times were so erratic that I would need to use hand-controls to operate a car. This was likened to rubbing your stomach and patting your head at the same time. My co-ordination not being up to it, that was that.

Now I use a wheelchair  it both compensates for this, and compounds it. Transport being what it is there are plenty times I have to take a carer and my little chair in order to use taxis.

When I was 16, I began to have spasms. I have no explanation for this, as I never had them as a child. These have also worsened overtime, and have meant covering friends in tea, feeding my dinner to the floor, or occasionally punching someone!! Although I was originally diagnosed with diplegic cerebral palsy affecting mainly my hips and legs, I have some trunk deformities, and struggle to turn my head. My ability to drop things is also legendary as I spend half my life retrieving things from the floor, sometimes causing myself much pain in the process. If anyone knows of a good value ‘reacher’ your suggestions would be gratefully received!

I was adamant that my blog would be about more than just cerebral palsy, however, I figured there was no harm in the occasional post. I’ve always been very open about my cerebral palsy. Hopefully whether you know lots about cerebral palsy or nothing at all this post has been useful to you. If you have any questions (within reason!!) I’d be pleased to answer them. 

since the time of writing I have since found out 4 september is World Cerebral Palsy Daywho knew! !