The most difficult thing about chronic pain

I found the most difficult thing about chronic pain was that it turned me into something I didn’t want to be. Perhaps my personality type would always have meant that I was going to be super-organised and highly motivated but chronic pain resulted in me becoming very tense and angry as I attempted to control factors that I thought would minimise the pain. I lashed out at those I loved most and this only made me feel guilty that I was not the mother and wife I had dreamed I would be. This grew into a deep sadness about myself. As time went on and the pain only grew worse I felt trapped as all my efforts to overcome it were useless and the medical profession seemed to be at a loss to help me.

When I look back at myself now I am amazed that I managed to do as well as I did. I know that inwardly I was putting my children’s and husband’s needs before my own while all the time I was longing for someone to come and nurse me. Perhaps the pressure to keep caring for my family kept me grounded. I simply did not have the choice to cave in to sorrow. And anyway I did so love them! I did so want to care for them!

Certainly by the time I presented at the first Pain Clinic – after about 18 years of increasing pain – I think was showing the psychological strain of trying to rise above my condition. I was confused about what was wrong with me and I seemed to be hovering perpetually on the edge of break-down.

stretched to breaking point

stretched to breaking point

 

Recently I watched a program called *The Secret World of Pain, a documentary produced in 2011 by the BBC program ‘Horizon’. The thing that most stood out for me were the last 2 pain sufferers. One was crying almost continuously, as if begging for pain relief. The other was holding back a lake of tears but when she experienced pain relief she opened the gates little by little so tears could flow.

In an instant I recognised myself and what can happen to humans who are subjected to relentless pain from which their minds are unable to rest. When you are the person in pain it feels as if you are being heroic by not crying too much and yet the tears you do release seem to be too much for others to cope with. I’m not talking about feeling emotional after only several months of pain – in 1989 when one side of my lower back and leg first became inflamed I was the very picture of optimism. I soldiered on with 5 young children, a husband whose work was demanding and a faith that God would help me sort it out.

But when the pain has gone on for ages, when the pain is often strong and causes sleep deprivation, when no treatment seems to alleviate it and others have exhausted their efforts to help THEN it is extremely difficult to maintain emotional equilibrium. I have cried in all manner of ways– sobbing quietly on my own, hysterical crying, a few tears filling the eyes or sliding down the cheeks, crying in the morning, crying in the evening, crying at anytime – even in cafes because I’ve been beyond caring how I look or how it makes others feel.

And then I stopped crying (well almost)! Because it didn’t change the pain. And sometimes it even made the headaches a lot worse. Also, why cry, when the people who love you can’t do anything more to help. It seems better to spare them some of the agony. But at the back of my throat there was a hurting sensation as if I was holding back a river of tears.

I didn’t want to have the pain but I didn’t have a choice. I simply had to learn how to be a loving person as well as carrying the pain at the same time. My secret is that God kept speaking to me as I would read the Bible in the mornings – somehow I was able to draw strength through spending time with him as my friend. It wasn’t that he spoke to me a lot about dealing with the pain, rather that he was able to concentrate my mind and energy on other thoughts, hopes and plans. I still felt like I was pleasing him and this gave my life such meaning and purpose. And by daily experiencing his close presence it didn’t feel as if I was alone while in pain or that he didn’t care about the pain.

Nowadays he has given me so much to alleviate my pain that I can never be grateful enough. And I haven’t lost the love of my family as I have seen happen tragically to others when they have been overtaken by the misery of constant pain.

There is a time to cry and a time to refrain from crying. There is a time to push through for medical help and a time to wait. But there is always a time for meeting with God. And God will give me what I need today to deal with this day.

Two pale-headed rosellas enjoying the blue berries on a dianella.

2 pale-eahed rosellas enjoying the blue berries on a dianella

Look at the birds … your Father in heaven feeds them day by day (Matthew 6:26)

 

*  The Secret World Of Pain, a BBC documentary which can be watched at

https://www.youtube.com/watch?v=75wkm9NTOb8

 

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Chill out!

If ever I get into a dreadful episode where one part of my body will not stop ‘burning’ then I can switch off the pain for a while by applying an ice pack.

Ice can be used if you twist an ankle, if you get a bee sting, after chiropractic treatment and after some operations. Many health professionals recommend alternating ice and heat for inflammation and only applying them for short periods e.g.http://thephysiostudio.com.au/health-tips/ice-and-heat-application/ . 

An eHow article identifies whether heat or ice or both are suitable for different types of medical conditions – and quotes orthopedic surgeon Dr. Stephen H. Hochschuler that ‘ice should… not be used for patients who have rheumatoid arthritis, Raynaud’s Syndrome, cold allergic conditions, paralysis, or areas of impaired sensation’. This article also says that heat is most often used for chronic pain conditions such as arthritis. So be warned by my Disclaimer as I want to explain what has been an effective tool in reducing my pain but it is outside the above medical advice. 

It started when I did not have access to any of the electrotherapy devices I will describe in other posts. I could sit in my own special chair (which I dragged from home to many social occasions) and in my own special seating in the car to keep my pain levels low. But holidays posed excruciating problems with seating on plane flights (I would stand up when possible), in motels, restaurants and hire cars. Sitting in these would set up an unremitting burning sensation in one buttock and leg. When we decided to fly to Queensland for a family holiday I became absolutely desperate. How could I manage the pain so that I wouldn’t spoil the holiday? The thought came to me to use an ice pack so that I could numb the pain. In this way a campaign began to freeze my butt off!

The ice treatment worked so well that when I returned home I started carrying a small esky wherever I went. The esky contained several icepacks and an ice brick with a tea towel or two for wrapping up the icepack. The tea towel meant that the ice pack didn’t directly touch the skin (or else you can get an ice-pack burn!). And the more I did this, the less I experienced pain – which lines up with the one principle for reducing pain : the more pain relief you can provide the more the nervous system is damped down and the pain levels are lowered. It felt like I was helping the entire buttock area go to sleep and forget the pain. 

old styrofoam esky complete with ice pack covers

old styrofoam drink cooler complete with ice packs & covers

Ice is never going to be a complete remedy. Sometimes the pain in my butt has been too strong for the ice to control. But it is a good way to help stabilise the area and to use in conjunction with other tools. I had already noticed years ago when swimming in the surf and diving under the waves that the chilly water soothed my headache. Sometimes I will tuck an ice pack up under the base of the skull on one side or drape it round the back of  my neck and shoulders and this can mitigate a few headaches. If you’d like to try a safe alternative you could consider rubbing something such as Mentholated Ice Gel (widely available in supermarkets and pharmacies) around your neck and shoulder tops. Of course if you wake up one day and your neck is stiff and you can’t turn your head then draping a hotpack around the back of your neck is best. Don’t use ice in that situation.

As a matter of fact, heat is one of the worst things that can really ramp up the level of pain I am experiencing – such as working out in the garden for a couple of hours in high heat and humidity. I can almost guarantee that I will activate high-level pain when I have a spa (buttock-ache) or sauna (headache). One musculoskeletal specialist said that this reaction to heat is just another indication of how my myofascial pain is intertwined with my nervous system.

You probably don’t have this sensitivity to heat but you can still trial this ice treatment – but only do it for 20 mins – and track whether cold (or heat) alleviates your pain. I know that my first instinct years ago was to reach for a hot wheat pack so I wanted to mention this basic type of pain relief in case you have never tried ice.  You don’t need to adopt my  practice of constant ice packing but I can say for myself that it has never given me an adverse effect in all those years. It has actually helped me to chill out mentally too – my mind can switch off from the pain for a while.  Many is the time I have gone to bed not with a hot water bottle but with an icepack wrapped around my buttock!

NOT snug as a bug