Lessons I have learned

I’ve been debating for a while where I’m going with this. The cold, hard truth of the matter is that I’ve had very little time for anything other than being mum, and trying to keep my body working as best it can. I can’t remember the last time I was able to read a paper, or watch a full film.

Turns out being a single mum to four kids is pretty time consuming, who knew!?

The challenges have been huge and diverse in the last year. How do I fulfill all their needs and requirements of me when I am one, seriously ill woman doing the job of 2/3 people? The logistics alone have been a nightmare, getting everyone where they need to be and collecting them, making sure they have all the kit they need for the various activities they do, homework, food, washing, teacher appointments, councilling, sports, friends.. The list is endless, and with four of them at very different stages, it’s definitely been a learning curve.

I often dream of inventing a teleporter, or a way to squeeze more hours out of the day. My day starts hitting the ground running at 6am, and ends often with several versions of ‘mum I need my…. Can I go to X tomorrow…. Oh no I’ve got to take in Y tomorrow’, at around 10pm.

Quite frankly I’ve forgotten what my sofa feels like to sit on.

It’s that squishy brown thing in the corner right?

I don’t even bother trying to get control of the tv or Xbox anymore, the teenagers are welcome to it. All I want is some peace and quiet, so the digital babysitter (ironically used for my teens not toddler) has become my saving grace, my best friend, the distraction they need to stop harassing me for five god damn minutes so I can maybe have an uninterrupted phone call, or even a bath, glass of wine or adult fun. (FYI I’m a little confused by what this entails at almost 40, my idea of fun is silence and sleep?)

All the while I’m sick.

I am in severe pain everyday to varying degrees. My kidneys are currently not working properly, my immune system is at about 40% which is good for me, my pericarditis is playing up (swollen third chamber of my heart) each day I spend half hour getting my back, hips and knees moving before I can focus properly.

I am a master of deception!

I’ve become highly skilled at hiding my pain over the last 24 years, and very few people will see or experience the vulnerable and broken me, that exists through the cracks.

It’s there though.

That person is still me, the vulnerable, broken woman. It’s a choice that I have made now, to live defined by all the other things that I am, not just my stills disease and secondary conditions. I am more than that, but it’s still there. It will always be a part of me, and that is ok. Many things have changed how I feel about my health; of course becoming single was a huge one. The councilling that I chose to have, to pick apart my past, my present and my future was also life changing.

I will be forever indebted to those closest to me, that were brave enough to sit me down and  tell me that I needed to get extra help.

The guilt I carried for so long regarding my health, life, relationships and parenting, somehow lifted naturally once I had truely exposed myself to this professional.

We came rather organically to the end of my therapy with him asking “how are you doing, really, are you coping?”

I said “you know what? I am actually ok” and promptly started crying.

He asked me “why does that make you cry?”

I answered without thinking ” because I have not been allowed to be “okay” for a very long time.”

My health had become this monster that was used to control me, I was made to live in fear of it, and to think that I could never be more. By the state, and by my husband. It was the perfect excuse to avoid the reality of life for my ex, and by proxy, for me.

I had become terrified that people wouldn’t understand that I am essentially two people; the frightened, ill woman that cries alone outside asda in her van, because she can’t walk inside, she’s in so much pain. The sick woman that can’t get into the shower without help, or make her own cup of tea.

But also the brave, strong woman that the next week reclaims her body, gets out there and lives a blessed life. A woman that goes to the beach, paddleboards, pushes herself mentally and physically, takes her kids out for adventures, lives, loves and laughs.

How does someone reconcile that?

The profound realisation I thank my ex husband for, is this: it doesn’t matter what anyone else thinks.  All the humiliation and horror I have been subjected to since our seperation taught me the most important lesson of my life, important enough to repeat it again: it doesn’t matter what anyone else thinks.

If deep down you are happy, and live an honest and respectful life, the  people left around you will also be happy, honest and respectful. Like attracts like, and the rest doesn’t matter.

It truely doesn’t matter.

We are all in charge of our own destiny and happiness, and must own our decisions, as they are ours alone to make. Whether that’s medication, lifestyle, parenting, a job, relationships, moving across the country for a shot at happiness. Own it. 

I have several pep talk signs around the house which have saved me in my darkest days, one simply says:

“Stand up. Head down. Crack on”

When I’m having a wobble, I look at it and see in those words how far I have come. Somehow I have been able to live by that mantra without consciously doing so anymore. I’ve trained myself to Stop hiding, and get on with living, owning the choices I make and It has become my default mode.

I will never give up again.

I’ll never stop being sick of course; I’ll always be up and down the hospital, doctors and chemist. I will have to take the help of my team of medical professionals to continue proving to the state that despite appearances I am a very sick, disabled woman. I will still call my boyfriend, best friends and family in tears some days telling them”this is too much, I cant do this anymore” and they will do what they always do: listen, care, love, and help me find my fierce, fighting spirit again.

The rest of it though, what all those other people think of me. My life. My health. The choices I make to care for myself and my children?

It doesn’t matter.