This week I received some news I was expecting, yet still wasn’t fully prepared for. The doctor told me I needed a referral to the Chronic Fatigue Syndrome clinic (often known as M.E. but I’ll be calling it CFS) and that I had Fibromyalgia as well (fibro). She prescribed me some painkillers and off I went.
It probably took me 48 hours to realise just what these diagnoses meant. For years I have suffered from pain. When I was pregnant with kiddo the pain was absolutely unbearable. I couldn’t move without excruciating shooting pains and I ached all over. I slept an average of 3 hours a night (good training for when kiddo arrived to be honest) and agony was the norm. After pregnancy I recovered.
Kiddo hasn’t slept properly in 3 years. Despite this I ran a business and was able to cope. Once he started school I would nap in the day and feel tired, but my life didn’t change. I still went to the gym and made it out with my friends in the evenings. Then one day, it stopped. Everything that was manageable was no more. Without going into detail I ended up closing my business so that I could survive. Then slowly things returned to normal. I exercised and socialised and coped with sleep deprivation. Then in October everything changed.
Our family experienced a tragic bereavement. It sent shock waves through us all and cracks began to show in my health. I was taken to hospital by ambulance suffering from chronic pain in my abdomen and prescribed bed rest. I took maybe 3 days off? And then carried on as normal. Over the next 3 months I felt like more and more of a failure. Why wasn’t I coping? Why couldn’t I do this anymore? The pain in my body was returning more and more regularly. I had always just brushed it aside in the past. After all, kiddo was more important. He must be put first. I was probably just being dramatic. Then on Boxing Day I felt a pain I’d only experienced in pregnancy shoot through me like a lightening bolt. Even the air that gently washed over me caused agonising pain. Lying down was hideous, even the bed covers felt like they were burning my skin. I just rode it out. A few days later I was sent to hospital again having lost clear vision in my right eye. Once again it was put down to exhaustion. I don’t think I managed to get out of bed for 10 days.
Once kiddo was back at school I saw my doctor. She looked at me with kind eyes and explained that my symptoms were typical of CFS and fibro, and that she was referring me for more specialist help. And that was that. But I was left with one huge overhanging question that I still don’t know how to answer.
How am I supposed to parent a severely autistic child with major ADHD and a sleep disorder whilst recovering from an invisible chronic illness? How? For months I have felt inadequate, as though I’m not cut out to be a carer, because other people seemed to be coping so much better than me. I think I preferred that feeling to the terror that fills my soul when it comes to keeping my child safe when I’m in a flare up and my symptoms are debilitating.
But this is where I am. I’ve dealt with challenges before and I’m going to deal with this one now. There’s no doubt our family needs extra support from the authorities, but that’s another story. I’m reading up on every homeopathic and mindfulness technique I can, along with specific fibro exercises. When kiddo is at home it’s a no go though, and that’s ok.
Our home life just got even more complicated and the needs of our family even more complex. But what I do know is that I was never a failure. I was never coping less than the others around me. My circumstances were just completely different, and I had no idea. I just assumed everyone felt like I did. Off they all went on their runs whilst their SEN kids were in school, and I was struggling to make it home from the school run.
The trouble with invisible illness is that it’s not just invisible to others, it’s often invisible to you too. When you’re caring for someone with disabilities it’s a new experience. You don’t know how you’re supposed to feel do you? So you just get on with it. Until at some point you can’t anymore, and a medical professional (if you’re lucky) sheds some light on the subject.
The goal of my blog has now changed. It’s still The Autism Diaries and kiddo will be my main focus. But our family has evolved and we now encompass so much more. I’ll be talking about my illness because there could be so many of you with no idea that how you feel is not the norm. Yes you are carers, but you deserve to be cared for too.
Thanks for reading,