Blue badge, children, Disability, hope, Invisible illness, Mama mifsud blog, Me, Media, Perception

Is it almost over yet?

Damn. Another year, another tough winter.

I’m sure I must have been a bear or a hedgehog, or something possibly less tough in a former life.

This morning came another day dragging my sore body out of bed, feeling sick, taking meds whilst continuing to do all that’s demanded of me on a daily basis. Sick kids add to my current workload; it’s been a crappy, crappy winter to be a parent of young children. One wave after another of virus have hit our family, each eroding my already compromised immune system just that little bit more.

Since I moved all those months ago, the good days have been outnumbered six to one by the bad health days. It’s crap and each year, still, it feels somehow a shock.

A shock? It’s been 25 years…..

I got an email amongst many this morning, reminding me to renew my domain. I’ll be honest,  I’ve been throwing myself into saving our plastic planet from my bed lately, so I’ve not visited here myself much lately. I’ve had a lot to say, but not about my health.

I’ve been avoiding that.

So anyway, it needs renewing and I find myself skimming through the years and notice, yet again that the winter is always my miserable, my body is useless, my life is shit time. I’m unsure why it’s still always a shock.

This year however I’ve tried something different as things took a dark turn.

We moved. I had a minor, but significant mental  breakdown, swiftly followed by a physical breakdown that has lasted months and included; new arthritis flare ups in neck and hands, chronic bowel problems resulting  in losing 10kg in 3 months, renewed migraines, Utter exhaustion. Plus the normal stills disease and fibromyalgia stuff. Alongside this, my middle daughter has been horrendously bullied and cyber bullied, my eldest daughter has some kind of undiagnosed extreme fatigue and headache thing, my son is struggling to manage the changes happening in his life and I live 300 miles away, and my youngest daughter having started school, has a renewed sense of loss that she doesn’t have a daddy in her life like everyone else.

Its been a shitstorm.

And then a surgeon, during a procedure, found something and mentioned the big C.

I told only those that needed to know, a limited handful and waited a horrendous 2 weeks to find out that what had been removed was in fact benign.

I think I cried more when the surgeon called me to tell me “although I’m not ok, it’s not Cancer”, than the day I had the procedure.

But through all this? I’ve thrown myself into something positive, something good, something to occupy my rambling mind.

In some ways it’s purely selfish.

If I’m writing and speaking about plastic, then I’m not having to think and deal with the reality of yet another crappy year of bad health and tough decisions.

I don’t have to spend yet another hour worrying about my eldest children making the adult decision, one I must support, to bring their previously violent and aggressive father back into our lives and consciousness. I don’t have to spend every second worrying if my daughter is sat crying in a corner at lunchtime again. I don’t have to feel a failure for not being able to fix things enough for my youngest to have her dad back in her life. I don’t have to think about the million what ifs that my stupid body might fail me with. I don’t have to think about the heartbreak of yet another good human dying, due to mental illness and the tidal wave of grief I see engulfing those  I care about. I don’t have to think about my broken sister consumed every day by the grief of losing her daughter in the womb, whilst watching our other sister bloom and give birth. (I’m so proud of both of them).

Life is so hard and cruel sometimes, it takes my breath away.

So yeah, I tried something new. I did all I could to help those around me manage . I threw my heart and soul at my children to give them the tools to cope. I practised self care. I went to my many appointments. I broke, I cried, I panicked, but I persisted.

I scrambled around and looked for the cracks of light in amongst all this suffocating darkness. I clung onto them, staring, until all I could see was dazzling light, blinding me and obliterating the shadows.

I took on a battle I felt I could win, something to channel my endless passion and fever into, that for one god damn time, wasn’t completely despressing. Well it was initially, but this, this was something I could change, this was something that could make a difference and was a positive use of my time. Instead of just lying here obsessing about how much pain I am in, or worrying how my children are coping throughout the day without me, I did something.

This isn’t supposed to be a pity party, really far from it- the point I’m rather ineloquently making is this. When you are sick all the time and your day to day life is focused solely on that fact, it’s so hard to see beyond it. You can’t change it. You can’t control it. But you can distract yourself from it.

Whatever that thing is for you, find it.

Up until Christmas, I felt utterly overwhelmed-  my resolution to myself this year: less procrastination, more action. Strangely the big C stuff happened within the last few weeks- all things considered I handled it pretty well; I think that’s largely because I’ve kept myself busy. I had an unexpected dose of Britishness. Things get tough , put on your big girl pants and get on with it.

It helped.

I wallowed a little, but in fairness I don’t do well with sedation-it buggers my muscles and head. My family gave me a day or two, but are very good at keeping me fierce and grounded.

Stand up. Head down. Crack on.

Its probably difficult for the healthy ones among you, to understand what a huge battle mentally life is when you have lost so much and have to fight so hard constantly to be “well”.

All I ask of you is this; when you see us sick ones pasting on a smile and going into battle, don’t assume that we have nothing better to do, or “at least don’t have to work all day” . Try and stop and think for a second,  I know so many secretly Sick women and men walking among us, that do all this every single day. They put on a performance; that’s how they cope, that’s how they take control back- by no means does it mean that they are well or no longer sick- they are just masters of disguise.

So support them, be kind, acknowledge their journey and how much it must take for them to even get out of the door. If they choose to work, Choose to volunteer, choose to paint all day, choose to sit and cry, choose to write rambling essays, choose to have a pity party for a day.

Support them.

I consider myself incredibly lucky to have a great team of champions around me that pick me up and dust me off whenever I need it- this is for those that don’t have that.

It’s their journey.

Their choice how to handle it.

Support them.

Anyway, thank goodness we aren’t saying “winters coming”…

It’s just such a shitty half of the year if you are sick. But, It’s almost over my fellow chronic illness warriors, the sun is coming and will ease our weary bodies and boost our aching souls.

This year is going to be different.

This time we will be ready to put on our big girl pants again after the sun sets,  prepared to survive another harsh winter.






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