Welcome to May and our monthly Chronic Voice blog link-up. I am experiencing a chronic pain flare-up with my rare eye disease, but I am battling through each day with a smile as always. Here is my response to the writing prompts.
I always feel I am pushing something. Whether that is physically pushing my children out of the door for school, pushing my dog away from the postman as he tries to deliver our mail, or constantly pushing past my eye disorder to try and work properly. I am a freelance writer and need to spend time on my laptop, but lately I have struggled with blurred vision due to the scars on my corneas. Fortunately, I am receiving hospital care, and I can only take each day as it comes, working harder on days when I can see clearly, and resting on days when I can’t.
I have been suffering with neck pain on and off for the past month. At first, I thought it was due to lack of exercise, or perhaps I had slept in an awkward position in bed. Now I wonder if it is a stress response because I am trying to be full-time parent, housekeeper, build a new business, revisit an old business, and try to earn money in preparation for our finances being affected later this year. I do simple stretching exercises to ease the pain and hopefully as I get out more with the dog and take longer walks my physical health will improve.
I have decided to try and post at least one article on my blog every single day. Don’t ask me why, I think I’m insane! It started by accident late last year, and I had a rush of inspiration for content. Now it has reached the point where I feel I must continue because I have come so far. I need to remain disciplined so that I don’t fall behind on my blog schedule. Remember, fellow spoonies, I am always happy to share blog posts by request. I will happily share news about book launches, for example. Just send me an email.
Just over a week ago I had a huge development in the treatment of my rare eye disease. I finally met the doctor I have been trying to connect with for over six months. It happened by accident when I attended hospital for a routine check-up. The doctor was direct and incredibly vocal about needing me to be assigned under his care. I think he surprised the chaperone nurse and the doctor I had been assigned at the time! Anyway, he has renewed my confidence in speaking out for myself. I am at risk of developing heart problems due to my congenital disorder, but because it is so rare, we don’t know what my chances are. This doctor said everything I had been trying to explain for the past ten years, and he is in a position to do something about it. He recognises the need to preserve what is left of my eye health and try to improve it while I am relatively young (under 40).
I am so thankful to the nurse that helped me see the correct doctor at my last hospital appointment. It happened by chance that I mentioned to her about me having Distichiasis. She immediately went to the doctor, Mr. Walker, and told him I was in the clinic and needed his attention. Now he is on a mission to help me. If I knew the nurse’s name, I would send a personal thank-you to the hospital, but she was so super-efficient and busy I never got chance! She restored my faith in the NHS, and I am so thankful I cannot express. My eye condition leaves me feeling fragile and lonely, and it is such a relief to finally have support from medical professionals.
Chronic Voice Link-Up
I joined the social network for A Chronic Voice because I needed to find people who understand what life is like with chronic illness, people like me. Today I have written a post using the May 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.
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I’m so glad that you are finally getting the right help from the right doctor. Our NHS is wonderful but it can be a struggle to get the right help sometimes. I hope the neck pain eases soon, it could very well be stress.
Thanks for sharing. Glad you are getting some help.
I am right there with you on the neck pain. I need to be more consistent with stretching.
Gentle hugs your way.
Thank you. Yes, I’ve been stretching and trying to lift my chin up and keep my back straight. Slouching is a real problem!