I wake in pain. Every day. No matter what I do that is positive and mind-body challenging, no matter what advice I faithfully adhere to, no matter what analgesics I take, every morning starts the same. I roll from side to side in my narrow bed, trying to find a position which is half-way comfortable. I fail, every time. The pain dogs me all day. There is no respite.
I look fine. I can walk and bend, and talk to people. I hide my constant aches and twinges and sharp knifing assaults and the cramping of muscles all over my torso. I smile and laugh and listen to others through this unending physical war of attrition – and only ever say ‘Ouch’ when alone and the whole thing becomes unbearable.
But this morning, writing this, I am near tears of despair and sheer agony – both of body and spirit. I know (not just because I have been told, but because I am reasonably intelligent and know myself well, good and bad parts) that there is a strong psychosomatic element to all of this. To put it bluntly, this latest (and one of the worst for a long time) flare-up has been kicked off by two really nasty incidents over the weekend and ongoing anxiety and distress concerning my marital situation.
But it is terribly difficult to relax and rationalise when confronted by the burning, knifing horror of twenty-four-hour-a-day pain.
‘Exercise!’ people say. So I do. I walk the dog every morning. I do the Posture exercises my physiotherapist has given me religiously. I meditate. I see friends.
‘Change your mind set!’ people say airily. ‘Challenge the negative thoughts…’
And I do that too – though it is very difficult because I am not being negative; I am in severe continuous pain: There is a difference.
The problem here lies in a very simple fact: I cannot change the behaviour of others. I am powerless in certain important areas. People keep saying, ‘No, you’re not. Do things differently…’ So I do, and it makes the whole thing worse and borderline dangerous.
Some people assume that I am simply a weak character failing to deal with a normal situation. I am not. I follow every piece of advice I am given, by friends, doctors, my therapist, my physiotherapist. I tell myself endlessly that I will come through this, that there are others far worse off than me, that at least nothing serious has been found going on in my body.
I try to be brave, to challenge my boundaries, to do and think things I have never done and thought before, to be positive. One of my challenges for the past two weeks has been to drive alone on the motorway. I have failed in this: The pain has been so bad in my back and ribs that I have tried to avoid driving at all unless it is absolutely necessary.
Does this make me a quitter? A pathetic specimen? Maybe it does.
I am lucky in that I have a core of trustworthy friends who know my situation and are on hand to offer support and comfort. But I have been deeply hurt by those who have chosen to trivialise or question what I am going through. Who have suggested, even stated bluntly, that I am simply not trying hard enough and that, if I thought a different way, I could have solved the problem years, even decades, ago.
I am a strong and feisty character. I am perfectly able to be assertive, even formidable, on occasions. I am not a shrinking violet – and, though naturally shy, am able to make friends with others. I am articulate, self-aware and always willing to ask for help from a wide range of professionals. I have not, in my life, been as good at asking for help from friends and family; I will admit this quite openly – but even here I have improved over the past year, and know that there is at least one place where I can go when things overwhelm me.
A while back, I talked to an old friend. He, like me, is a person most would call strong and outgoing and more than able to stick up for himself. Yet, I discovered that he, in the recent past, has gone through exactly what I am going through – and that he was no more able to influence the situation for the better than I have been able to. He, like me, lives with pain.
It is a beautiful day: Sunny, bright, with a crisping shell of frost around the trembling new ‘egg’ of the morning. I shall get dressed and walk beloved Jumble soon, and will try my best, as I always do, to think wonderful thoughts and to sink back into the delight of recent lovely happenings.
It is easy to condemn others for their pain, for their anxiety, for their depression (though I am not depressed), for their inability to deal with things WE pride ourselves on handling effortlessly. It is easy to say and think, ‘What a WIMP! If I were in her situation, I would never allow A; I would stand up for myself; I would do it better, do it right. I wouldn’t be in pain…’
As if, in some sick way, not being prey to the horrors of psychosomatic pain made one a superior human being, a stronger and more normal person.
Sometimes I get so desperate that I feel like screaming, ‘You try living in my body for ten minutes, never mind all day every day, and THEN you can judge and make insensitive comments. Until then, shut up and stop being so bloody sanctimonious…’
But of course I never do – because who knows what agonies my interrogator is going through as he or she passes judgement upon my perceived inadequacy?
What I will say is this: If someone shares long-term constant pain (whether it be physical or emotional) with you, that person is actually doing you an honour, trusting you, putting you above the common herd with whom their communication is largely superficial.
My close circle of friends know me, and are there for me. They do not judge or dismiss or tell me that I am making things up, or exaggerating, or pathetic. I am blessed to have these people in my life.
Today? I will try my absolute best to get through it with as many smiles as I can. I will hold my head high and not let the world see the agony underneath – and I will continue to hope that, one day, there will be an easing, an end to this: That, one bright day, I will leap out of bed, after a night of uninterrupted sleep, and my muscles and nerves will be quiescent and not screaming.
Today? I will NOT give in to the occasional whisper of thought which says, ‘You’d be better off dead…’ because I know others value and love me, and I also know that I still have a great deal to contribute to our lovely world, that my life is worth continuing. I will not let pain defeat me.