How Chronic Pain Impacts on Life

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.

How Chronic Pain Impacts on Life

Finding

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.

Researching

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).

eye-surgery-spookymrsgreen

Dating

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.

Reusing

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.

 

September Link Up Chronic Voice

Recounting

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.

British PNR by Catherine Green

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About SpookyMrsGreen

SpookyMrsGreen: The Pagan Housewife. Mindful parenting and modern pagan lifestyle. Join our tribe now! https://www.subscribepage.com/SpookyMrsGreen
This entry was posted in dry eye, dry eyes, eye health, eyes, mind body spirit, pagan mother, Random Musings, rare eye condition and tagged , , , , , , , , , . Bookmark the permalink.

7 Responses to How Chronic Pain Impacts on Life

  1. Alien Resort says:

    I know what you mean about it being a part of your life. I’ve had lazy eye all my life, and I was over 60 before I realized that my appearance affects the way that others interact with me.

    • Wow, really? I would never have thought it would make such a difference. But then I am always self conscious about my eyes and the way I appear to other people, despite reassurances from my friends and family. Thanks for commenting.

  2. Chronic pain saps out the energy, not leaving a lot for artistic creativity. I’m so sorry you had to deal with this all your life and admire how you have achieved success as a published author and, as well, are raising two children with your husband. You’re a good role model.

    • Thank you, Flossie. Nobody ever stopped to explain that my eye pain might impact on my body and mind in general (I suppose it wasn’t an issue back in the 80s), so I grew up thinking it was normal to feel this way. Now I am learning to speak out and express my feelings in the hopes of receiving a little sympathy when I need it.

  3. Sheryl says:

    Thanks for joining us again, Catherine. Good to learn more about your eye condition for sure, it’s so super rare. And you voice what many of us patients are concerned with too regarding single use plastics. We need these medications to survive and can’t avoid them. Companies should really step up their game!

  4. I relate very much. My mistake was letting chronic pain dictate what my life would be. Jt is easy to just let it take you over. Thank you for sharing.

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