Mixed connective tissue disease…A mums story

Well, it seems my girl had a good day today. She was out and about with her grandad for most of it and they had a nice day together. Which is so good to hear.

These days are rare and often times after a day like this her body objects and for a few days or more she really suffers for it. And unfortunately today is no exception. After a busy weekend with friends, and having a kick arse migraine last night, spending time in town with her grandad has her energy levels absolutely spent! She’s now exhausted and the reflux, neasea, heartburn and bloating is kicking her butt tonight! She’s practically sitting up in bed as laying down is too painful. Dinner feels like it’s still stuck in her chest, what little she ate, despite being hungry. She also couldn’t manage all her pills due to these overwhelming symptoms.  So it was a case of prioritizing the the most important ones and sitting herself up in bed so she could eventually get off to sleep. As getting to sleep often doesn’t come easy for her either, despite the extreme fatigue, which has her sleeping a lot during the day…go figure!

It seems with every positive step forward, she takes a few steps back!

A week ago she was in hospital with chronic regional pain syndrome in her foot. She couldn’t walk on it or touch her toes. And she used crutches to get around. We spoke with a doctor who helped her realise she can get through this set back. Much to my surprise, she did and a lot quicker than I expected! She really took on board what the doctor had to say and she pushed through the pain and got it sorted. I was so proud of her.

Now a week later…bam! Three steps back. I don’t know how she does it. She has so much fight in her. But I see her weaning too. I see the cuts on her eyelids and sores at the side of her mouth that have appeared overnight. I see her emotions fracture as she tries to cope with the utter exhaustion she often feels. The share frustration she gets when she’s hungry and wants to eat but is too ill to even try. I see it all! But do I know how it feels?…no. Can I appreciate what this disease is doing to her?…maybe a little. Will I ever truly understand the battle her mind, body and soul are going through every day?…I doubt it! Yes I try. Yes I worry, and know that’s normal. Yes I believe I’m a good mum. Yes I believe I do my best for her. Yes I’m also a nurse and I’ve researched this disease and have come to know it quite well. But I will never completely understand or appreciate how complex this disease is for her.

As I write this the tears flow.  I worry about her future. Will she fulfil her dreams and ambitions? Will she experience love and intimacy? Will she….the list goes on…all I can do is try to live in the now. All I can do is be there for her as best I can. Her aspirations are for her to seek. I can only sit on the sideline and love and support her. She won’t know my fears. She won’t see my tears. That’s my role in her journey.

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. 😊