Radio Silence

A few days have passed since I’ve last managed to type much up and that’s been for a multitude of reasons.

We are coming up to the end of nursery for Tiny Miss H, so we’ve had transition days and equipment fittings for starting school in August, sports days and final sessions of her motor co-ordination sessions.

Tiny Miss wears Piedro boots which give her stability and enable her to be on her feet for most of the day at nursery. Booking appointments for things like this that mean we have to be organised and plan ahead as the boots are made to order and take 6 weeks to arrive. So we have to leave it late enough that growth wise we get the size right but soon enough to allow time for them to arrive. I can’t just nip to Clark’s the weekend before school starts and grab whatever fits. Every little aspect of life is just a tiny but more complicated, requiring a tiny bit more thought and planning.

We are also approaching the end of the academic year for Little Miss H which spells lots of change. Next year she’ll be in a new class room, with a teacher who is not only new to her but new to the school so that in itself is super challenging.  Add in that she has a poem to recite at the end of year assembly then it’s no wonder that we aren’t getting much sleep.

We’re also going on holiday in less than a week and organising and preparing for that is taking a dis-proportionate amount of energy and attention.

On top of all of this I’m in the middle of an horrendous flare up with some new symptoms. My joint pain has escalated to red hot swollen joints; arthritis. This is uncomfortable as you can imagine and just to add salt to the wound I’ve been put back on the steroids I was so thrilled to come off.  I also spent the day at the hospital yesterday having my infusion which I have every eight weeks.  This has the effect of making me feel like I’ve been run over by a bus and causes me to have a bit of a reaction to it.

This cocktail of drugs, sleeplessness, pain, busy diary juggling and differing support needs for the girls means that finding time to sit at the computer is challenging enough but actually finding the headspace to string a sentence together is quite another.

Hence the radio silence.

As a family with these additional needs I often find that my head is just too full.  Finding the headspace to make decisions, to have the space to consider and plan anything new in the diary is a luxury but one I’m consciously working towards.

It’s not unusual to have upwards of 10 necessary medical/therapeutic appointments a month.  We have spells where we average 18 a month.  That is a lot to juggle.  That’s on top of trying to run life.

When you add in the normal extras like vet appointments, hairdressers, car service, glazier to fix the broken window, joiner to fix the freezer door, handyman to sort out XYZ, optician, dentist and all the other chores life holds then you’ll get why sometimes I have nothing left in the tank for a phone call to a friend, or headspace to plan a massage.

I’ve spoken before about self-care but for parents of children with additional needs.  This lack of headspace can mean planning self-care is just one more ‘job’ and the stress of organising it can tip the balance from a treat to another chore. If you factor in fibromyalgia symptoms then sometimes a massage is actually quite painful and if you can’t predict how you are going to feel it can be difficult to overcome the stress of planning something like a massage which you may or may not enjoy so self-care can easily slip down the list of priorities.

My main tip is having got the first appointment booked I now always rebook for my next appointment before I leave. Once it’s in the diary I plan around it, they often get moved, rolled forward and changed but I now rarely cancel as once it’s out of the diary finding space again is hard.

So my point I suppose is this.  If you’re my friend or a friend of someone else with complex family needs then forgive the radio silence. Expecting me to find the headspace and diary space to call or meet up is perhaps a ‘chore’ too far.  Please understand it’s not the talking or meeting up that is the chore, it’s having the headspace to plan it that can be.  The best thing you can do is take that job from my hands, you call me, you plan coffee, I’ll always answer or turn up, I just can’t take the lead, I don’t have the headspace.

Finding time to do paperwork, finances, legal stuff, research, school forms, is tricky as I need to find time plus energy to concentrate and those two things are ships that pass in the night!  It’s all these tiny additional complications that make a busy life like we all lead into a chaotically busy life that can be unintentionally isolating.  It’s all these tiny increments that add up to a whole that’s greater than the sum of it’s parts.  I’m lucky, I’m a naturally organised person but with ‘fibro-fog’ it can be hard.

So anyway that explains the radio silence, I hope you also understand that I am not complaining I’m just explaining!

To my friends thank you for your patience and please know you are always in my heart and mind x

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Author: H2Au: the stuff of our life

H2Au: the stuff of our life. A personal story of our family's life with Autism, a rare chromosome disorder and auto immune disease.

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