I joined the social network for A Chronic Voice earlier this year because I needed to find people who understand what life is like with chronic pain. Today I have written a post using the October link-up prompts, to show my experience of living with a chronic pain disorder. Click here to find other blog posts from fellow chronic pain sufferers, or #spoonies as we call ourselves online.
My eyes had been sore for a very long time. My last hospital appointment was in the new year and I was not expecting to return for twelve months. Eventually I couldn’t take the pain anymore, and I decided to phone the Manchester Royal Eye hospital. It was an ordeal! It had been so long since I had to call my doctor that I couldn’t decide which department I needed to see. I tried to phone the secretary of the consultant that I am currently in the care of. She was very abrupt, did not give me chance to explain my situation, and transferred me directly to the admissions department. Since I didn’t have a letter with an upcoming appointment, they couldn’t help me, and said I had to speak to my consultant’s secretary. I explained how unhelpful she had been, but they advised I could only speak to her. So, I tried again. This time I spoke on her level, in her tone, and made sure she listened. She then exclaimed that I should visit the emergency eye department, to which I explained that they refuse to treat me because they do not recognise my condition and do not want to interfere with my consultant’s treatment plan. After all of this, the hospital phoned me back within half an hour inviting me to an emergency appointment two days’ later. That was some relief!
The pain in my eyes had increased dramatically throughout August. I knew that it was partly caused by the stress of our family dog falling ill and subsequently dying. He was old, and he lived a good life. We miss him terribly. I miss him all the more because he was my nurse when I felt ill. On days when I sat at home trying to rest my eyes while the children were at school, he would be there to cuddle me and keep me company. When I had eye surgeries over the years, he was always there to help me recover. And now he is gone. I cried a lot during August, while he was in the pet hospital, and during the weeks afterwards when he faded away. I still cry for him now, and it makes my eyes sting. I knew we could not keep him forever, but I was hoping for at least a few more years with our boy. Alas, it was not meant to be. Nurse Baxter has passed over the rainbow bridge, and we must let him go.
My next challenge in the hospital drama was how to get there. We live in a small town about 30 miles away from Manchester, where my hospital is located. There are no direct train routes, and I had to factor in getting my children to school before I left home. There was nobody available to drive me to Manchester, so I had to do it myself. This is a journey I have taken numerous times, both as a driver and a passenger, and is also my old commuting route from when I worked full time. Yet for some strange reason I panicked about getting to the hospital. I think perhaps I just needed a bit of moral support, a shoulder to lean on. My eye condition leaves me feeling very lonely, even when I am surrounded by friends. As I grow older, I feel like I am dealing with it more and more on my own. My mum used to be the one that helped, but her health is worse now, and she physically cannot help me in the way that she used to. Anyway, I persevered, and I made it to the hospital safely, having left my children in the care of friend who would take them to school. I was fine. I could drive.
I always visit the Manchester Royal Eye Hospital with some sense of trepidation. Nowadays there is nothing the doctors can physically do other than monitor my condition. They cannot discharge me because they cannot cure it. I began to feel like a nuisance patient, one that just won’t go away. On this appointment I met another new doctor, and as I entered the consulting room, I thought, “Here we go again. I have to explain my condition, she will pluck out a few ingrowing eyelashes, and she will send me away.” I will admit my heart sank a little bit, and my anxiety increased. This doctor was different, however. She looked at my notes, she asked how I was feeling, and when I explained about the pain she nodded. She looked me straight in the eye and said, “I understand that your pain is real, and I can explain it to you. We do believe you.” The relief I felt was indescribable. I could have cried! The doctor explained that as medical research has progressed, they now recognise that there is a chronic pain condition in the eyes. My nerve endings have become sensitive after years of treatment for the ingrowing eyelashes and the dry eye syndrome. Now the nerve endings are constantly inflamed, in a permanent state of alert, and that is what causes my pain. It made perfect sense! All those times I had been desperately trying to pull out eyelashes that weren’t there, and I wondered why I couldn’t ease the pain with my eye drops. The doctor suggested a way to help, beginning with the use of some new eyedrops that have a more gel-like consistency. She also said we could consider a pain management clinic if I continued to struggle. She listened.
My fellow spoonies will understand how I feel when I say that I could have kissed that doctor. I almost hugged her when she confirmed that I wasn’t a hypochondriac. After at least ten years of chronic pain that possibly wasn’t caused by ingrowing eyelashes, this doctor had an answer that made sense to me. She showed me that the NHS does care, that our health system can work, even if it sometimes takes a while, and that there is hope for those of us who suffer in silence. I know that I am surrounded by loving, caring people at home. My family and my friends are wonderful. Those that have seen me through all the surgeries, hospital visits, new treatment plans, trials and more do understand my condition. But sometimes I wonder if they forget, because I always put a brave face on it, and I never let it get me down, at least not publicly. The loving care of my friends and family is invaluable on those days when I am struggling. Even the simple act of taking the children for a few hours or taking me out for a distraction can make a huge difference. Loving care keeps us strong.
Are you Team Jack or Team Danny? Sign up now and receive your FREE copy of It’s Complicated from #TheRedcliffeNovels series set in Cornwall, England.