I Thought Control Would Save Me. I Was Wrong.

What control looks like when very little is actually in your control.

Control is a slippery thing. We all like to think we have it; over our bodies, our calendars, our careers, our relationships. But living with chronic illness exposes the truth: control is often an illusion.

Anyone who knows me will tell you that I am a control freak - I like to know what is going to happen, when and who exactly will be involved. What they don’t know is that I am like that because I actually have very little control over most things.

My mornings all start the same: wake up, after what has usually been a terrible night’s sleep, take pain killers and wait for them to kick in before I can even think of getting out of bed then it can go a couple of different ways - I either drag myself to my dressing table, put on my armour of hair, makeup, outfit, jewellery and wonder how I am going to get through the actual day. Or I can’t get out of bed at all and that is the end of any plans I was naïve enough to make in advance.

The easiest (although not easy AT ALL) thing to do would be to give in to the bone-deep fatigue that ME gifts me with or ride the waves of Fibromyalgia pain surrendering all notions of control. But that is not me - I am alive and by golly I am going to live - even if that means living very slowly most of the time.

That’s the daily tension I grapple with between the comfort I need and the control that’s almost always just out of reach.

Living in an unpredictable body means I can’t bank on consistency.

An activity I did yesterday with relative ease can become impossible today. I make plans with family, with friends and even for going into the office. I plan meticulously even though I know an unexpected flare up could, and often does, come along and tear those careful plans down.

It’s disorienting. You go to bed hopeful, you wake up defeated. Or sometimes it’s the opposite, you expect a terrible day, then surprise yourself with energy. There’s no pattern, no logic.

And yet, this unpredictability makes me cling harder to the small areas I can control.

Work becomes the arena where I try to hold the reins tightest. Projects, deadlines, goals, they’re markers of progress that chronic illness can’t fully erase.

I am ambitious and not afraid to let people know that I have my sights set on the very top of the mountain. I push too hard, demand too much and have the highest of standards. I meet deadlines, put my hand up to help out and strive to find better ways of doing things. I can be regimented over systems I have introduced and can be disappointed when people don’t show the same drive I have. That is on me - it is my choice to push myself right to the edge of, and sometimes past, breaking point. This is what I can control. I feel like I am making the decisions even though the chronic illness is constantly breathing down my neck - I am great at my job and nobody can take that from me.

Friendships bring another layer of control vs. comfort. Cancelling plans doesn’t just mean missing out on things you really want to do, it means wrestling with how people see you.

I have had to cancel everything from a quick catch up over lunch to New Year’s Eve parties and everything in between. I cancel these plans, not because I don’t care about the person or don’t want to do the activity. I cancel because I am not in control of my body, my health, my ability to function. Often, I end up cancelling plans at the weekend because I have pushed too hard at work and need to recover. It is easier to explain to friends than to call in sick, again. I know that my priorities are a bit skewed here and that is something I need to work on.

When you cancel multiple times on your friends and loved ones it can feel like your relationships are slipping from your hands, one cancellation at a time. People say “don’t worry, I understand,” but there’s always the silent question I ask myself: Do they?

Sometimes the comfort comes in choosing honesty. Sometimes it comes in saying nothing. Either way, it’s another place where control is fragile at best.

Food is one of the few areas where comfort and control overlap.

I really love to cook. It is something I don’t get to do very often anymore because, spoons, but when I can manage it it is almost ritualistic for me. It also gives me the sense of providing something special for my family - nourishing them the way their care nourishes and fortifies me. I get excited trying new recipes and knowing that I can create magic. I can’t whip up a ten-dish tapas feast anymore (those were the days) but I can whip up the best darn risotto you have ever tasted. Complete with a fatigue-beating, fool proof oven cooking recipe thanks to a mash up of Delia, Jamie and Nigella!

Cooking gives me some control back. It’s a place where I decide what goes in, when, and how. The seasoning just right, the exact way I slice vegetables, the rhythm of stirring something slowly on the hob. These rituals don’t fix the chaos but they do anchor me in it.

When your body and life feel unpredictable, even the smallest predictable ritual feels like winning back ground.

The truth is, I don’t really have control. Not in the way the world defines it. Not in the way ambition, work, friendships, or health might demand it.

But I do have moments. Rituals. Little anchors of comfort that help me breathe through the storm.

I find comfort in food, in Friday night dates with my best friend, in the silly reels my daughter sends me when she knows I am feeling down, in knowing that I am enough.

Control, it turns out, isn’t about ruling everything. It’s about finding the small, stubborn ways to remind yourself you’re still here.

Everyone has their own little anchor. What’s yours? I’d love to hear the comfort rituals that help you steady yourself when life spins out.