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 September 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.
Having been diagnosed with a rare genetic eye disorder at a very young age, I grew up not knowing I was different from other children. I mean, yes, I had a lot of time off school to attend hospital appointments and to have surgery, but my parents never made a big deal out of it. It was just part of my life, and part of me. As I grew older, I found that I was different from other people. I slowly began to recognize that something was wrong with my eyes, and that perhaps I should speak to the doctors about it. But they never seemed to understand my chronic pain. They simply dismissed it as unimportant.
When I got to university, I decided I should try and learn more about my eye condition. I wanted to know if other people had the same condition that my brother and I had. It took until my late teens to get an official diagnosis from the doctors. They knew what they were treating when I was a child, but they seemed reluctant to tell me the name whenever I asked. I gradually learned that I have a condition called Lymphodoema Distichiasis, but I also have severe Dry Eye Syndrome and chronic Blepharitis, all connected to my genetic condition where I grow a second set of eyelashes on the insides of my eyelids. I bought some books about eyes, and tried to learn about my condition, but all I could find was reference to Dry Eye Syndrome. Even now, in 2019, I have not found a single other person aside from my brother and my dad that has Distichiasis (double row of eyelashes).
I have been with my husband for nineteen years, married for ten. Back in the early days of our relationship I regularly had hospital visits for eye treatment. I remember him bringing me flowers after one of my routine eye surgeries. He was still trying to impress me! Nowadays there is none of that. I even have to drive myself to hospital for check-ups because he can’t possibly take time off work for me… But still, I don’t remember my eye condition affecting my ability to date when I was a teenager. I think back then I was largely in denial and I simply tried to get on with my life, living with the pain and ignoring it as best I could. Mostly when I meet new people, they are unaware that I have a chronic pain condition until I tell them. But I am still self-conscious about it.
I’m currently battling with my demons about the amount of single-use plastic I consume with my medication. While I don’t need drugs specifically, I do rely on artificial tears, ointments and lotion to sooth my eyes and ease the pain. My minims come individually wrapped in plastic packets, and while my husband says they are recyclable (he’s a Chartered Waste Manager), I am still unsure how they are processed by our local authority. My Hyabak eyedrops are in small plastic bottles that I can put in the recycling bin, my Xailin ointment comes in a plastic tube which I think is non-recyclable, and I also use a bottle of lotion called Blephasol, which again I recycle when it is empty. I suppose all I can do is be mindful and reduce and reuse where possible.
Wow, reading all of that reminds me just how time-consuming my eye condition can be! I suppose I never really think of it as something to deal with. It is simply there, my body doing what it does, and I have learned to live with it. But I can recall lots of events throughout my life where my eye condition has restricted me. For example, there are many careers that I couldn’t pursue because of my eyes. I have to limit my driving sometimes when I am struggling with the pain and discomfort. During the past few weeks I have been in excruciating pain because I cried a lot when our dog got ill and subsequently died. All the crying irritated my eyes. And now I have lots of very fine, small eyelashes growing inwards and scratching the surface of my eyes. Life goes on.
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