Today the ‘single thread of hope’ was taken away from me …….
I tried to paint a picture of how I really feel, but I could not find the colours to make it all seem real. Not one colour hot enough to show the burning pain, not one colour bright enough to make me wince again. Not one dark enough to show the isolation. In the end all I saw was one thin line, worn, frayed and almost broke, to my mind that one thin line is a single thread of hope …….
Poem by Bear Peterson
I have osteo arthritis and fibromyalgia for 12 years now, I am 65. The last 2 years the pain has got so much worse. My life is so restricted, I cannot walk, play with my grandchildren, go anywhere. I have general all over pain like I’ve run a marathon without training and pain in my knees and feet with osteo arthritis. I have fatigue and am like the bunny in the Duracell battery advert, I am the one without the Duracell batteries. If I use all my energy, I literally cannot move, it is like someone has cut off the power. I am very lucky that my husband does the shopping and cooking and we can afford a cleaner and a gardener. After exercise the pain in my hips and thighs is acute and the pain meds I have been given naproxen, paracetamol and codeine at night don’t touch it. I have been doing graded exercise but the pain has got so bad that I’ve had to stop. Today I saw my Rheumatologist who basically told me she could do nothing more for me, there were no more pain meds to try. Only ones that would make me drowsy or put on weight, neither of which I would want she assured me.
In that instance she took away the only thing I had left - ‘the single thread of hope’ that my life would get better eventually and this I have I lived with for the past 12 years. If there is no hope then there is nothing……..
Im not proud to say, I cried in her office telling her this is not living it was existing but that just spurred her on to tell it to me how she saw it, she was direct and straight to the point. Perhaps she thought I needed a stiff talking to to pull myself together. She talked about graded exercise, as if I didn’t know, of physio therapy as if I don’t have any, infact I have physio once a week, of managing my fatigue, I’ve been doing that for 12 years but the icing on the cake was when she told me to take time for myself. My reply ‘ my whole life is time for myself’!
I came home and sobbed. Where do I go from here?
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