Fatigue: Part 1 - Feeling Like I Could Sleep Forever!

Have you ever felt like you are walking through treacle or that your limbs are so heavy they are too hard to lift? Fatigue looks different to different people and it can be brought on for many different reasons. Here is how it affects me…

Looking back I’ve always been “tired”. I’m definitely NOT a morning person and could lie in at the weekend until noon without a problem. I love to snooze in the afternoon, I am not great company on a car journey - the motion sends me sleepy and could probably fall asleep on a washing line if challenged to!

When learning about autism, I learned about how overwhelmed I actually was. I realise how much recovery I needed in the evenings and weekends to get over the day and be ready for the next. I’d always felt lazy. Why could I wake after sleeping for 12 hours and still want to sleep some more? When switching my mindset to realise it was fatigue and not tiredness it gave me such relief. No need to make excuses anymore. I’ve always been an advocate for an underdog and when diagnosed autistic, I felt I had become that underdog and needed to speak up for my own needs. I was sick of feeling uncomfortable in my own skin and speaking up seemed to help.

Then came breast cancer… the fatigue from treatment hit me hard. Fatigue on top of fatigue - great! I used to drive my daughter to school, 45 minutes in the car there and 20 minutes home. From about 6 weeks before I found my cancer lump, I couldn't do that drive there and then home without stopping in a lay-by to have an hour’s snooze. She was new to the school and I just thought doing this new drive twice a day was making me tired. I had no idea it was a symptom of cancer.

I expected treatment to wipe me out. Major surgery, followed by chemotherapy (or battery acid as we nicknamed it), then radiotherapy (being zapped by lasers), how could it not! 10 months of treatment was going to have its toll. Surgery turned infected and then although healed on the outside was told it would take 12 months to be fully healed on the inside. Every chemotherapy treatment I had built on the last, so the more treatments I had, the more rough I felt. I was told this would take 6 to 12 months to leave my body. Radiotherapy - the easiest of the treatments - I’m not sure about this? In terms of side effects yeah probably. In terms of recovery each day, yeah probably. 2 years on, the boob that was treated is still really itchy and my scars are tighter which means I don’t have full range of movement in my shoulder. I think because I was already feeling lots of fatigue, the amount added from this set of treatment was neither here nor there.

When I’ve spoken to friends post cancer, fatigue is the main thing that we have in common. We all have other side effects that relate to our individual treatments but fatigue is there in all of us. 

We have gone back to our lives, they have gone back to their jobs, some on fewer hours and me, I cannot work anymore.

6 months after treatment has finished is when I got my diagnosis of Functional Neurological Disorder (FND) and Non-Epileptic Attack Disorder (NEAD). FND is the umbrella term for my brain misfiring signals around my body. It has been explained to me that we were built to live in caves and run from tigers. As life has evolved our bodies haven’t. We are living in such a stressful and anxious world and our bodies don’t get software updates like computers do. As we have traumas in our lives we need to take time out to allow our bodies to process and adapt. I have either experienced too many little traumas or a major trauma and my brain has said “nope… no more… I’m freaking out!... I don’t know what’s going on!”. In turn this causes pain and fatigue as my brain's way to make my body listen.

This is why my seizures are the last thing to happen. If I ignore the signs of the pain, fatigue, woozy head, weakened limbs, my brain carries on sending signals to make me rest. Non-Epileptic seizures are my brain’s final way of saying STOP! ENOUGH!

My days now are all about not having a seizure. The balance of fatigue versus energy. It starts first thing in the morning by noticing how disturbed my night’s sleep is. I’m sure we have all woken some mornings feeling like we have tossed and turned all night and feel like we’ve not had a wink of sleep. Do I need to go out? Have I planned to go out? Do I need to cancel my plans? My family and friends are very understanding but I often feel like I’m letting them down. If friends are coming over for a catch up, I tend to invite them to my house. Even if I am struggling, I don’t have to go anywhere. It’s more likely to happen.

It’s only when I start to write these things down that my reality hits me. As the different elements of my life have evolved over the last few years, I have changed the way I live life. I have strategies to deal with all types of situations but I feel like my main battle is against fatigue. I wonder if it will ever be something I am rid of. Will FND ever go away? Will I ever wake up refreshed? No matter how many strategies I have, I will always be neurodiverse. I will always get overwhelmed with the world. So for the foreseeable future, if I cancel plans, if I need some quiet time, if I need to take time to meditate, please don’t take it personally, please don’t think I’m weird. As the song says in The Greatest Showman film…This Is Me!

JuJu x