My first entry…

Hello to you all and welcome to my first blog. I turned 40 this year and well my life is very different from what I thought it would be. Instead of having a thriving social life, secure job, married with children, and often sinking a good beer or 3 after an epic mountain bike ride, I am mostly at home resting, feeling so spaced out it’s like I’ve been drugged. I wake up every day, heavy and frail. I’m irritable like a twisty 4-year-old child fighting to stay awake at bedtime, only I’m a 40-year-old who just woke up after a good 8 hours sleep. I drag myself through each day hanging on. A step too far has my brain feeling a kind of pressure, I’m weak yet so restless. I begin to aimlessly wander the house trying to find something to do as my mind searches to satisfy its need to be busy. It’s useless. My state of deliriousness has me crawling into bed under the covers to sleep, like someone has switched my power off. This is me when I suffer a fatigue crash and I spend each day trying to avoid crashing out like this. I need rest and must rest after every task I do. Some of you will have guessed just from that short description that yes, I’m suffering from Chronic Fatigue and I’ve had it for around 3 years now. It has flipped my life completely. I can’t drive, I can’t work and I rarely meet up with friends. With rests, I can manage light jobs in the house and I can go for short walks with the dog. For most people during this pandemic their lockdown is lifting, for those of us with chronic illnesses our lockdown continues and every day is a battle. We must stay positive though and me writing this blog is not only my outlet, but I hope to teach fellow sufferers, their friends and families how to cope on this bumpy journey they call life.

The perfect crash mask

How did I get here? Most of my 20s, I was in a mentally abusive relationship. A term called coercive control, I was belittled, humiliated, my life threatened and he took out my whole being from under me. I’m not going too much into that as it’s over with, but it could be part of the way I am now. Moving on, in my 30s I moved away and started a new life. Things were looking up but then my back had problems and I was in all sorts of crazy pain with sciatica and slipped discs. In and out of hospital, limping around work places, struggling to sit down, struggling to walk too, the discomfort went on for years. I was limited at work, I couldn’t keep friends, it was a nightmare. If that wasn’t enough at age 37 I had my second spinal operation. This would have been fine only I had a severe reaction afterwards. My face swelled, a painful purple-black rash covered my body, swallowing felt like glass in my throat, I had blisters on my gums, my skin peeled, and I had a fever, It was horrendous. The doctor said I was literally being cooked from the inside out, words that stay with me. I spent two weeks in hospital and many more months recovering. Recovery was lots of physiotherapy to build up my strength. I remember that summer trying to ride my bike and not being able to stand up on the pedals. My legs would just shake, I was so weak. I spent time riding around in circles in the local Travelodge car park (I lived in Durham, that car park was the only place it was flat). I tried swimming too, I needed a float as my legs wouldn’t kick, they’d lost all strength. It was in the showers I noticed my hair falling out too. I wasn’t too bothered at first, I knew my body had been through a lot, but as time went on and it got thinner and thinner. I started to look at wigs just in case. Luckily it didn’t come to that, although there were some nice ones and some styles way better than my own hair. This ghastly reaction was diagnosed as Stevens-Johnson Syndrome and Lupus SLE, they can’t say which. I eventually built myself back up but I was never back to full strength and it was during studying for my Master’s Degree that fatigue soon took over. I slowly had to give up my studies, my bike riding, driving the car and my job too. Welcome to my 40s and the wonderful life of Chronic Fatigue. I haven’t been diagnosed with a specific illness yet, but I’m currently being tested and I await my MRI brain scan results. I will be posting my results on here and sharing my experiences as I start this new chapter in my life.

Another reason for blogging is that my friends and family all tell me how positive I am. I have been through such a lot in my life and yet I remain so positive. There’s a big reason for this. You see I had a break down after that terrible relationship years ago. Panic attacks, mood swings, I was deathly quiet for a time and I lost trust in people. A counsellor confirmed I had PTSD which I had help with. I vowed never to feel that way again. And so far I haven’t. It is not easy but I have a few tricks up my sleeve which I will share as my blog continues.

By the way, my entire life hasn’t all been doom and gloom, I did have a great childhood. I was always out and about with family and I had a big circle of friends. My 20s may have had its rough times but I also was introduced to mountain biking and road cycling and this became my hobby for the next 20 years. I’ve ridden to some amazing places in the UK and abroad and met some fantastic people a long the way. And during my 30s I was in a lot of pain but I still managed to study, albeit hobbling around campus. I’m proud to say I gained a first class BSc (Hons) Sport and Exercise Psychology. I’ve learned a lot from my degree and from my own experiences so any advice I feel can help, I will post. It is important to me that this blog provides some advice and support to keep us going forward.

Invisible illness

Before I begin here’s a little tip, if you struggle to read… use a ruler or similar to cover up the above and below sentences so you can only see the one sentence you’re reading. My mother told me this one and it can really help when my head and eyes strain.

I also aim to lighten things up a little, I mean how can I not talk about this thing we call ‘brain fog’? It’s hilarious! This one time the word toaster completely left my head…enter the “toast machine”. Wow, I just couldn’t find the word for toaster. Oh and another time I adamantly asked my fella to put the clothes in the oven to wash them. I mean where do the right words go? They just leave our heads. You may also read some quirky stories of my dog Kita the Akita who’s sassiness never fails to amuse me. Just the other day she sneaked into the visitor centre at the local park. She just gets a scent for food and scampers off on a mission. It’s like the target is set and someone pressed the fire button, all recall lessons become defunct and nothing will stop her.

Well thank you for reading so far. They say “life begins at 40” so yes, I am poised waiting for what’s to come. I hope you continue to join me on my journey as I live and share my life with chronic illness and all the carry-ons that it brings.

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