Every month Sheryl at A Chronic Voice hosts a link up for chronic illness bloggers giving prompts to share thoughts and experiences. The prompts for September are Finding, Researching, Dating, Reusing, Recounting…….
September has rolled in and I find myself thinking about my pain – specifically my chronic nerve pain – even more than at other times. This month is the anniversary of the trial for my spinal cord stimulator implant and I can’t help but find myself RECOUNTING the events that led to this. The ongoing and relentless feelings from the lower back down to the toes – electric shocks, burning, creeping, cold, running fluids, sharp, creeping – to name but a few of the words that describe nerve pain. Drug after drug, surgery after surgery and the accompanying feelings of hopelessness as each fails to bring some relief to this untameable beast.
Another referral followed, this time to a pain clinic – but which health professional would stick their head above the parapet and take me on? At some time most chronic pain sufferers will experience doubt – doubt about the physical symptoms being experienced, doubt about your own sanity and doubt as to whether family and friends believe you. “How can it be possible to have so much pain if nothing shows on a scan?” “Try not to think about it all the time” “You need to pull yourself together” – just a taste of the messages that might be received. By the time I was under the pain clinic in London, I was FINDING myself regularly questioning whether the pain was in my head, how I could carry on living like this and just what would the expectation of the clinic psychologist be. I knew that my referral was with a view to having a spinal cord stimulator implanted, but I also knew that I would have to fulfil certain criteria first including attending a pain course. Most pain courses will have a large psychological element and this was no different – over the next fortnight we attendees would be FINDING ourselves sitting on a “metaphorical” bus with our fellow passengers representing the parts of life affected by our chronic pain: body, mind, loved ones, employment, friendships, emotions, self esteem, social interaction, sleep, finances, independence….the passengers were endless and deeply personal.
It was important, and remains the case, to understand that our chronic pain cannot be completely alleviated by drugs and that no one should medicate to do so – as discussed recently by Chronic Mom – or by a device such as a spinal cord stimulator. In fact the medics were very clear that this form of symptom control will not help everyone and may even make some symptoms worse. The months between leaving the relative safety of the course and returning to have the trial procedure were spent RESEARCHING spinal cord stimulators/neuromodulation and exactly how it might help mask chronic nerve pain. This led me to the world of forums, self help/pain groups and blogs – what an abundance of information and support is out there. Sadly there is also an abundance of suffering out there and at the time I was staggered by both the number of people living with chronic illness but also by the outpouring of support that I received. I can honestly say that this led me to decide the night before my trial surgery to start my own blog for both family and friends and to offer my support/story for others.
Hubby recalls the morning of the trial clearly and says that it was the most nervous he had ever seen me before surgery – and in many ways it was far less invasive and much shorter than my other ops, including my caesarian sections! I felt physically sick and very scared to the point of standing on the doorstep of Guy’s Hospital, London at 7.30am and declaring I was going home. Why did I feel like this? I think it was the genuine fear of the future if it didn’t help – the fear of living alongside this pain with no control or relief for the next 40 or more years. How many of my chronic pain friends have found themselves in this situation at one time or another, I wonder? My guess would be the majority and this would cover a huge variety of different pains – maybe you can share with me! This fear can be mentally draining and lead to psychological trauma, depression and even suicide. I have been fortunate that the implant and connected wire/electrodes sitting snugly by my spinal cord do give me some relief, but there is a constant fear that one morning I will wake up, switch the device on and find that the wire has moved or the pain just is no longer covered by the device. Of course this only covers one of the many pains weaving in and out of my body parts – at the moment I would love to have it extended to cover the nerve pain running from my neck to my fingers! What a pity there is no easy fix, no magic wand for all our pain types.
So this brings me on to RE-USING some of the techniques that we were taught during the programme to help to manage pain. These were all well recognised methods including:
- gentle exercise – to improve physical fitness, stamina, muscle tone, spacial awareness and a sense of well being. It is well documented that for back pain particularly, immobility will often increase pain and muscle spasm.
- mindfulness and/or meditation – including using guided imagery
- breathing techniques and relaxation – to help challenge negative thoughts and stress which can increase pain levels
- recognising and understanding the root causes of chronic pain – including how medication may or may not help to reduce pain
- accepting that chronic pain can rarely be cured but that it is possible to move forward to live a full life
- heat therapy (heat pads, wheat bags), cold therapy, hydrotherapy
- pacing – learning to pace oneself in order to undertake daily tasks from washing to socialising
- social interaction and talking – including talking therapies
- combining all of the above to cope during a flare of symptoms
I am constantly reusing these techniques in order to live day to day with my own chronic pain. It is important for me to have realistic and attainable expectations and yet still be able to live – remembering some days this is easier than others!
So just how do I introduce the word DATING into this post? Well my dating these days consists of a calendar highlighted with a series of “dates” with different hospitals and specialities – I believe that rheumatology and gastroenterology are to be personal highs in the coming weeks. Add to this a mix of date nights with the spinal cord stimulator charger to ensure my internal battery never runs out(!) and binge watching favourite Netflix shows (currently iZombie) and you will be starting to get the picture of the heady extent of dating in the senior PainPals household……
To read other contributions to this month’s A Chronic Voice link up visit here!
This is also shared to Esme’s Senior Salon part of the Sharing, Inspiring and Promoting Bloggers group