Chronic Illness Is A Rollercoaster Ride You Can Never Get Off

I must admit this morning I’m having a bit of a meltdown.

Schools again are causing me stress.  Different schools, different reasons, different children.

I’m in the midst of hunting for a secondary school for my son and I am trying desperately hard to make to right choice for him.  I know from experience that you can visit all these schools and think that you have made the right decision only to find out that you have made a mistake.  At the end of the day all schools are good schools until you have a problem, it’s how well they deal with things when they go wrong that defines them, anyone can promise you the world but unless they deliver the goods in practice it’s all lip service.  It scares me.

My other son is in a flare, a slight runny nose is enough with his hypermobile Ehlers-Danlos syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to make him unable to function at all, literally.  He’s in his first GCSE year and this week is struggling to sit up on the sofa.  I’m second guessing all the decisions about his education and obsessing about all the different options for his future.  As I walk round the many schools considering the options for my middle son it makes me painfully apparent to me the life he is missing out on right now.

But I’m ever thankful that he is blissfully unaware as he sleeps his life away without a care or worry in the world.

Very soon my daughter is due home.  My bright and articulate superstar.  Already the school term is beginning to take its toll on her in terms of pain and fatigue.  At the moment my hopes of getting her back to school full-time seem distant and unachievable and although a few years away I wonder if she will ever cope in secondary school.

I hear the words ‘it’s a minefield’ in relation to our education system and children with medical needs all too often.  I know we are not the only ones but when I’m surrounded by my friends and their atypical children, their lives seem so simple.   I bet they don’t see a group of teens on the corner of the street and long for their kids to be hanging out with them instead of in bed unable to sit up without becoming breathless.  I wonder how calm they would stay if their 7-year-old started screaming ‘my heart hurts, my heart hurts’ while they were laying quietly on the sofa.  Or how they would manage if they had to quietly manipulate their bones back into position in the morning just to get out of bed because they subluxate and dislocate in their sleep.  They are my friends, I love them but sometimes our lives feel poles apart.

My go to man when I’m stressing is my husband.  Always.

At the end of our conversation he says to me “Sarah, you know better than most, chronic illness is a roller coaster ride you can never get off.  There are ups and downs you have to ride it out.  Go and read your own blog.”  I hate to admit he’s bloody right, as always.

Having no control over my son’s illness kills me, I like control. To have a plan. Having made the wrong decision about his secondary school kills me even more, because I desperately want the best for my kids and I thought that we had made the right choice.  I’m trying so hard not to make the same mistake again.

But he’s right this journey is a rollercoaster, I have to accept that I don’t always have control.

There are blind turns that take you by surprise and sheer drops that make you sick to your stomach.  It’s emotional, sometimes you want to scream and cry at the same time.  The worst parts of the journey are the dark tunnels, where you can’t see a way out and you have no control at all of where you are heading or how to get there.  Then, when you least expect it the track levels out for a bit, you can sit back and enjoy the view and feel a little calmer and more in control of your destination.   You pray for it to last all the while the butterflies in you tummy are a constant reminder of the twists and turns that still lie ahead.  So you buckle up and prepare for the ride.

So for today I cancel the tutors, get my son to the sofa and spend some quality time with him watching rubbish t.v instead of with the questions spiralling around in my head.  They will still be there tomorrow.

Sometimes you just need that one person to bring you back down to earth and put everything in perspective.  Our journey may be hairy at times, one that others would not comprehend, but we can’t just choose to get off this rollercoaster.  I have to sit back, relax and remind myself not to miss the little joys in everyday, even if that is just a cuddle on the sofa with my big boy.

 

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Written by Sarah Wells

Thanks for stopping by… My name is Sarah, I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world while raising my children to be happy with their perfect imperfections :)