If you are anything like me, fast approaching 40, then keeping up with these latest acronyms is an ongoing battle to understand what my pre-teen is talking about! FOMO is ‘the fear of missing out’ if you were wondering. An old university friend had to explain this to me – I found it a particularly interesting one though as it is very relevant to my life with a chronic illness. The fear of missing out is very real and consumes my thoughts on a daily basis.
A chance remark by a friend made me realise that despite believing I was very open about the limitations of my day-to-day life, they still didn’t realise how debilitating my conditions are. I can go for weeks without leaving my own front door and every occasion I leave the house requires meticulous planning. Somebody has to be with me at all times. I can’t go out alone as it isn’t safe. My condition is life-threatening and I have alarms at home to contact emergency services in a crisis.
It’s incredibly hard for people to understand why I am unable to go out more than once a week, if at all. That in order for me to attend an event, no matter how small, I must prepare my body by resting for several days beforehand and it can take a week or more to recover. I have to take extra mediation, know where the nearest hospital is, take an information pack and letters from consultants explaining my condition and a card which proves I’m steroid dependent.
I have had to educate all my friends and family on what to do in an emergency, tell them how quickly I can deteriorate and how serious it can be. The consequences of not being informed are terrifying and, understandably, I have to be cautious in all things I do.
I have two children of school age and, as always, the last half term is crammed with assemblies, award ceremonies, concerts and parents evenings. I have five events to attend in the next few weeks and two on the same day. I don’t want to let my children down, I want to be there cheering them on. I want them to see my face in the crowd of parents and know that Mum didn’t miss anything. To do that, I have to dismiss everything else. My body will struggle to get through these alone and push it to the absolute brink.
We are constantly reminded that we only have 18 summers with our children and we must make the most of every second. What I wouldn’t give to spend that time doing fun things with my children. Last week we were lucky enough to be invited to Chester Zoo as part of a charity evening and taken round by a personal guide. It was a wonderful experience for my children but halfway through I became very ill. I’d taken all the precautions beforehand, rested up, taken extra medication but it wasn’t enough. We carried on with the experience but the consequences for me were far-reaching. I want to enjoy special moments like that, once in a lifetime opportunities, but it took its toll on me physically and mentally.
It’s not just me who has the fear of missing out, it’s my children too. They want me there, they need me there, my presence in their life is vital. More than anything I want to be there. Life with a chronic illness doesn’t just rob you physically, it steals your life. I continue to try and claw back any semblance of normality I can but it always feels like a losing battle. I just hope my children will look back on their childhood and know that Mum tried her best. I keep going for them, I have to. I miss out on so much and it is heartbreaking as a parent. I don’t want it to be like that for them.
You can read more about Katy’s life with chronic illness here