Overcoming Adversity: My Story

Venturing into the new world of blogging, I’ve been thinking about all the things I want to talk about, be it words of wisdom, things I wish I’d been told before, or topics that generally interest me. I decided that the first three blogs should be able to give you a sense of who I am and what I believe in. Especially to those of you who don’t know me.
The first blog introduced the ideas of why I’ve started the blog, the second was around my beliefs as a kidult (read it if you haven’t already and that will make more sense!) and coming to the here and now of the third blog, I think it would be remiss of me to not talk about my health. Don’t worry. This is not a pity post! If anything, its a celebration of things past and things achieved. It may get a little honest and heavy, but please don’t let that put you off.

If you’ve read my ‘about’ page, you’ll know that I have a chronic health condition called myalgic encephalomyelitis – ME for short. I was diagnosed back in 2007 at the age of nineteen. The condition will not ever leave me and there is no cure. But make no mistake. It does not define who I am. It is merely one aspect of the many pieces of the puzzle that creates me.

Before I go on, I want to give you a wee overview of the condition from my point of view. I appreciate that it varies from person to person, with some people completely bed bound and unable to have much of a life. I am one of the lucky ones that has been able to learn to manage the condition to the point that I have a full life. Yes, there are times when the condition flares or I relapse, but plenty rest and accepting what my body and mind needs at the time usually does the trick.

The term myalgic encephalomyelitis can be broken down into three elements: myalgic meaning muscle pain, encephalo meaning the brain and myelitis meaning inflammation.

The condition has a myriad of symptoms that vary in degree. On a day-to-day basis I always have pain present in my muscles and joints, mainly my spine and neck. On a flare, this is exacerbated and spreads to my legs, hands, and arms. The circulation in my body can be poor which also results in pain. Thankfully this usually presents itself with the flares and not in the day to day. I also get muscle spasms. Again, flares only.

Cognitively I have brain fog a lot, meaning I’ll lose words for things, forget my sentences, forget people’s names, and have complete mind blanks where there is literally nothing in my head. Concentration can also be a big challenge. These things are always present but again vary in severity.

Finally, there is the fatigue. Again, this is always present, every day. Just sometimes it’s a lot worse. It’s a different sort of tired from the tired you feel at the end of a day, or the tired you feel when you haven’t had a great sleep the night before. It’s a relentless exhaustion that on some days will physically prevent me from lifting my head off the pillow, let alone get out of bed. Sometimes the day will feel like it’s moving in slow motion, or that I’m moving in slow motion, and everything is speeded up. There are also other additional symptoms like headaches, sore throat, and sensory overloads. It’s quite something. As you’ll have realised by now, it’s quite the smorgasbord!

When I was first diagnosed there was a mix of relief and denial. Relief that I was being taken seriously and that I was right, something was wrong. But denial that it was ME. That the life I once knew was no more. At nineteen that was a hard pill to swallow. I don’t remember much of the eight and a half months of being bed bound as my brain had shut down a fair bit. I do remember taking comfort in horror films though. I’d watch them to get a scare, because when I got a scare, there was a small adrenaline rush in my body that reminded me I was still alive. I still watch horror films, as they help me to put life into perspective sometimes.

There were points when I wanted to give up, but I didn’t. This was not what my life was going to be. I refused to accept that I would be ill for the rest of my life. So, I fought. I fought as much as I could when I couldn’t. That fight looked different at various points in the rehabilitation process. Fighting in the sense of learning about the condition and my bodies response. Listening to my mind and what it was telling me, acknowledging when it was fear talking, and when it wasn’t. Relying on the support of close friends and family throughout was invaluable. It was often them that would help me to note when I was doing a bit too much for the day. Having gone from being bathed by my mum, to being able to sit outside with people, it was hard at times to not push myself too much. The reality of the impacts of doing too much too soon was present. Yes, it was amazing being outside with people, but at what cost? How much would I pay for it later. An hour or two hours seated in a garden on a sunny day with friends and family could mean three days in bed resting. Ultimately, and even now, there is always a price to pay for everything I do and how I live my life. So, for me it’s about weighing up the value with the return. Is this thing I need to do today, going to be worth being in bed for a couple of days as of tomorrow.

Over the past fourteen years I’ve learned how to manage the condition. I’ve had ups and downs to the point I’ve questioned if there was a point to it all. Yet I continued to fight. I want to use this blog and this space to continually remind me of the things that are important and reflect on where I am today. I’m generally healthy, with only occasional flares and it’s been a while (touch wood!) since I’ve had a relapse! Long may that continue. I work full time, and although I rest a lot in the evening and weekends, I live a full and happy life.

My intention is to do another blog that goes into a bit more detail about the recovery and rehabilitation process but for now, I guess what I’m saying is please don’t give up. Whatever it is you’re going through, keep fighting, take it minute by minute or hour by hour if you must. Things will and do get better.

The adversity can be overcome. You’ve got this.

This has been a SmartPonders.
Thanks for reading.
Steph x