Hi there and welcome 😊💞

I’ve been up for a few hours now. I’ve greeted two of my children, and watched and helped them as they get themselves ready and off to school.  A few cups of tea later,  I’ve cleared the breakfast dishes and hung  out some washing. Its 1030am I want to vacuum, but it’s too early yet. I potter around a little longer, then I decided it’s time.

I sneak in quietly and see if she’s stirring yet. Nope, but it’s time. So I quietly say her name and give her a gentle shake. She responds with a few incomprehensible moans.  I ignored it and try again.  She moans, says she has a headache and wants to sleep. So I offer a marid of pain relief options, to which, she responds with a no, as is often the case.

So I go about my day. Making as little noise as possible but also knowing I have things to do. An hour or so passes, she’s up. I’m hopeful this means she’s going to stay up, but no just a toilet stop. I offer to arrange food and encourage her to hop up and get herself into her day, or at least sit out of her electric, adjustable bed.
But today is not a good day. She’s exhausted and sore. And so her day begins, much like a lot of her days….

Some days feel like ground hog day for me…it must be a million times worse for her!

Hi I’m the mum of a teenage girl with mixed connective tissue disease or mctd for short. But there’s nothing short about this disease.

Mctd is a cross over of a number of autoimmune diseases that damage the connective tissue of the body.  The main ones being lupus (causing pain and inflammation), scleroderma (hardening of the skin and/or internal organs),  and rheumatoid arthritis. Sometimes other similar diseases come along for the ride too, like sjogren syndrome (dry eyes, dry mouth, and mouth ulcer, etc)

Mctd causes extreme fatigue, joint and muscle pain, raynaud’s  (circulatory issues leading to cold and painful hands and feet), pulmonary hypertension, lung sclerosis   (scaring of the lungs) Gi issues like Reflux, heartburn, bloating, difficulty swallowing and slow gut motility…to name a few things. Some people suffer from all of these and more, some people have less. It’s diagnosed through blood tests and symptoms.

My girl has a lot of what I’ve just mentioned although her heart and kidneys seem ok. She struggles with pain and fatigue on a daily basis and is on medication to help with these and other symptoms and to slow down the progression of the disease.

I have started this blog to help get out her story…through my eyes. For me it’s a way to express myself, as a mother. To share my  grief, sadness, joys and triumphs. It’s about putting it out there in the hope it reaches others who know that as a mum…sometimes life sucks! But what can we do about it? How can we as mums reach out to others and offer support, knowledge and kindness? This is my way of reaching out. So welcome to a young womans journey,  through the loving eyes of her mum.  It’s not an easy journey and I don’t know where it will take us. But if you would like to come along, feel free to do so. Any words of wisdom and support would be greatly appreciated. And I hope I can offer the same along the way. 😊