Learning New Things

To truly value the hard times, we have to approach life as if there are lessons to learn

In a recent group post my fatigue coach, Pamela Rose asked us to take the Tony Robbins quiz on our “driving force” – linked here if you are interested. I am a little sceptical of Robbins style and some of his philosophies around health. But I will say at surface value he got me right. My drive is for growth, always learning and looking to grow and get better. The idea of considering is these driving forces is to ensure that we are approaching our lives with them still in mind, even if fatigue is putting up barriers.

I think that there is often barriers in my life. As I recently wrote there are ways to overcome these: no more tears and of course I do apply all of these methods to try and live creatively. But I also think the situations themselves can teach us things in life.

Time for some quiet rest

Right now life is telling me I have to concentrate on my family. My son’s not coping at school so his needs are much higher. It is also reminding me that life has easier and harder times. Sometimes the hard seems to drag on. However just as to live with a chronic health condition you have to come to a place of acceptance, in these tougher times you need to accept they are just that.

I may be around less or doing less creative work for a while as I get through this difficult time. But I am committing to my 50 day challenge so I take the best care of myself. I am committing to creative moments and artist dates still to feed thia need. I am still committing to trying to read as a good book is a happy place even in dark times.

I will update the blog next month with how it is all going with hopes that soon I will be able to write again. In the meantime, write right now if you can.

Christmas in the (Brain) Fog

I am looking forward to the Christmas holidays and working out how to see through the fog

I can feel the pressure of making Christmas magic rising as I write. As a parent, I have a strong desire to make the young ones’ Christmas a special, sparkly time but what do you do when your brain is not at it’s shiniest best. Last year we couldn’t even see our families, so now we hopefully can socialise there is an expectation that this will be the best year. But amongst all that pressure I am trying to manage the planning and preparation with brain fog and fatigue. Here is what I have worked out may work for us this year.

A foggy winter ahead, photo in the public domain

Reduce your workload: We have planned to go to my mother-in-law so I do know already that I don’t need to cook, a lot of labour is saved and I think that having the main work on the big day taken from me will be a massive help, as well as being extra delicious that we can actually be together this year. In addition the familiar surroundings help me and my son and for that part of Christmas we will stay at home though go over on several days. This is really helpful to keep parts of the routine which keeps my soon’s energy a bit more regulated which helps us all feel a bit calmer.

Pace yourself: I know now that I need to pace myself, leaving a few days between each social gathering and taking it much more slowly on those days. I am so thankful to be back together with people this year but that doesn’t mean I can throw my pacing plans out of the window. January is depressing enough without having a massive crash. When I do socialise, I know already I might need to leave earlier than I might like to or take a little break part way through so that I can join in. It’s tradition to fall asleep after the turkey anyway, so won’t be too much of a surprise if I insist on a rest this year. I may also have some tougher days afterwards but I know if I do things that lift me, like being around people that I love, this will be worth it for me if I don’t go too far.

Buy online: When it comes to planning presents, I am doing tiny chunks and using a lot of lists on my phone so hopefully I don’t forget things. I have to say that I have seen statistics like 42% of people will buy their presents off Amazon this year and though I don’t like it, that will most likely be me. I know already that going to shops involves so many elements that are tiring, this time I need those items to come on delivery. I have been also trying to support a few friends with their Etsy crafts that I love but when it come to the plastic tat my son demands, it’s back to the five minutes ordering on my phone and along comes my friendly delivery lady the next day (who I am quite chummy with now.) Let’s hope that by next Christmas, I can be well enough to face the shops (and they are still there) but for now I have to be realistic about what I can do for us all.

Photo by Marta Dzedyshko on Pexels.com – probably less baking this year

Ask for help: Learning to ask for help has been a massive learning curve with managing fatigue. I have worked out what is more tiring now by listening to my body carefully and I have tried to ask for help in these areas. A friend came over this week to get the decorations out of our loft for us, she was lovely about it and though it seems a bit silly with my breathing issues and fatigue it is a massive load off me and I will be very slowly starting to decorate. In addition to asking for physical help, I have set my Mum the mission to find the impossible toy that my son has asked for. I was going round in circles online to try and find this “must have” and in the end I realised the brain strain is too much.

Keep it simple: The final thing is to avoid too much online content that drives me to want to make the magic so much. It is possible that I did “do a Pinterest” in previous year and make cards, bake mince pines with my son and make a Nutella Christmas tree for breakfast on Christmas morning. But it might be that this year is not that year. The Christmas tree may end up less trimmed – though it is one of my favourite things so I may choose to spend my energy on it – But really, what my fatigue is telling me right now, is that these things that seem so important are an image we get sold about what a perfect life can look like.

But if a chronic condition can teach us anything, there is no need for perfect, in fact pushing yourself is the worst thing you could do. After the year we have had personally and the pandemic era we have all gone through, I can only say that what is most important is to savour the time to rest and have fun together.  

Do you have time to read?

A frequent preoccupation, I think about how my Summer of reading might pan out

I have mulled over how Mum’s get time to read before because it is a constant battle. Ultimately, though I love to write and journal, my deepest, longest love has been reading. Often it is escapism. I have been having a real Edwardian fad recently, listening to The House of Mirth by Edith Wharton and The Little Ottley’s books by Ada Levenson on Librivox. Along with my current vogue for the PG Wodehouse collections Stephen Fry is narrating on Audible, I have been experiencing a world of manners and often comic sensibilities. Even with House of Mirth which is frankly tragic, I have found a soothing place to escape to. Though these books are not unproblematic, depicting views reflective of their time that are uncomfortable, most of the times we can be swept away by this historic and yet somehow modern era of feisty women, feckless men and ridiculous social mores that people break with mostly little consequence.

This has been a new part of my resolve to read more. To acknowledge that audiobooks count as reading. How strange that I have held myself to such a strict standard for so long. But then if you had told me at University when I stacked my beloved library desk with piles of books and photocopied chunks of essays, that I would have an electronic reader now, I would have been shocked and saddened. Declaring then that there was nothing like “real” books. I still find grand libraries heavenly, particularly where the stacks are filled with beautifully bound books, and you can browse for hours. It will never stop my heart from soaring, but this is not my everyday life. I graduated fifteen years ago and though I love a research trip, they are not often.

An ereader has been essential to reading more. I can flick between the Kindle app on my phone and my device. I always have a book with me and can pick up whenever I do get a chance. Generally this does involve my son playing on the iPad and I suppose I may never win the war of screen time if I am always on my phone – reading or not. In addition to having access to all my library, I can chop and change as I like. I have always been someone to read different books at one time. Now I acknowledge this about myself without guilt. It’s often about mood. Just as I have been seeking something soothing in recent tired times, there has been other times where I have wanted something deeper or heavier to read (looking at you Hilary Mantel). Switching is so easy now I carry my library around, I wish I hadn’t taken so long to read this way.

And speaking of switching between books, the biggest freedom I given myself over the last few years is simple: I don’t always finish books. As a practice, it feels like giving up or failing. But what precious time I have I need to give to what grabs me. As I wrote in my post about books I didn’t finish, it is frequently about timing. Wintery books are for Winter, some time you’re too bone-tired to concentrate, other times you getting obsessed with a certain era. By not forcing myself to read something that hasn’t wrested my attention away from the world, I do read more. Maybe not of whole books but of a greater breadth, exploring more and letting my whims take me.

I still think that having a goal helps, as I reflected before, the Goodreads reward system helps keep me motivated. Odd to think I need to be motivated to do something I enjoy the most but such is my fickle, distractable brain. By thinking ahead to Summer reading and tracking my progress, I am giving myself the chance of prioritising some energy for escaping into a good book this Summer. Shortly, I will be picking my son up from school as the term ends so here are my Summer picks I aim to make time for this year.

How do you make time to read what you want?

What it’s like to be different

So, right now we have it easier than a lot of parents. But we also have it different.

Watching my friends struggle through the rigours of home learning these last few months, often holding down full time work, I have been in awe. It is an unfathomable situation for many and I have written before about how much I admire my friends going through this pandemic. The education expectations have been heightened this time so there has been even less chance than last year to take time for yourself. And so in many ways we have been lucky, our son has gone to school so that he can have his routine and a differentiated curriculum. He also needs extra support like OT and Speech and Language which school have to make best efforts to fulfil under the terms of the EHCP.

We had our own mini-experience of the challenges of home learning in lockdown three. We had to coax our son through remote school during our ten days isolation. This included me sitting on the end of the sofa in a mask or shouting from my isolation bedroom to get him to engage. Obviously my husband did the lion’s share (I was ill with covid).I was amazed that we actually managed any of the tasks set. Like lots of children, he has zero motivation and two baffled parents trying to explain a curriculum that looks nothing like anything we ever learnt. So we did what we could and rewarded any effort with the iPad. He wasn’t too fussed about staying in all that time but I was very ready for the routine (and sleep that come with it) to return.

We are really privileged to get the help we need. Amongst all those people struggling to educate their children at home are many children with disabilities and special needs who don’t meet the criteria of going into school or cannot because of health risks. Special Needs Jungle reported recently on the number of children who have their “Provision Denied” in the current circumstances. Without specific actions to address this, their research suggests there may be even greater gaps in learning for these children. As such I feel a real marked difference from many of the parents I know, whether parents of children with special needs, or parents of neurotypical children.

Because he needs something different, we also happen to experience the world a little differently. There are sometimes little shocks like when I hear babies babbling. I didn’t know until much later that my son didn’t babble. He is a talkative fellow now, he just needed some extra support to chatter away to us. At times there are slights which sting, friends will listen to me talk about challenging behaviour and compare my son to their much younger child. Although I too will find it helpful to see a rough picture of child development and (ignoring the age categories), celebrate that he has reached a milestone of new behaviour. He became an appallingly bad liar recently which I am secretly celebrating as a major stage of social understanding that is completely new for us!

Photo by Quintin Gellar on Pexels.com

I don’t mean to compare my life to others, and especially not to people’s highlight reel on social media. But I share these experiences to explain that we are on a different path. It is a country road we are taking. Not even necessarily slower to get to the same spot. If you happen to be stuck in traffic on the motorway, (for example when you are unwillingly home-schooling your child and I am not,) our car may get somewhere quicker. We may even end up in the same places sometimes (for example our son may end up in a job or at university the same as any other children I know). But we are not travelling there the same way. and the picnic I packed is a little different.

This experience of feeling a little different, reminds me of what my son might feel at times. He is not really sure why he goes to school at the moment, for example. Difference can feel isolating at times. But part of my lesson about acceptance is what I see in children in his class all the time. True inclusion in society is not ignoring that there is diversity in experience, but acceptance that not everyone goes about things the same way and just getting on with the journey that you have to take.

Are you counting down until your children go back to school or will you really miss the fun you’ve been having?

There is good

At the end of every episode of the podcast deep dive into the Good Place, Marc Evan Jackson says “Go do something good.” The melliferous tones are a joy to listen to and somehow this phrase has been an ear worm for me in the last few weeks.

Whether it’s the rainbows or how everyone is considerately moving about the streets around each other, I am seeing more good in the world than ever. We have banded together in a mutual aid group in our neighbourhood although so far this has just been donating a bit of food, I feel closer to the community than I ever have since moving here four years ago. We talk to our neighbours and my son, who is very social but struggles to engage well, is having nice chats with our neighbour most days while he fixes up his car.

And in amongst this joy, sadness too of course, and fear. The emotional rollercoaster seems to be the only thing we can certain of at the moment. Coronacoaster I believe you call it. But we are handling it.

Elizabeth Gilbert was also on the Ted Talks podcast which was a brilliant salve in testing times

I sent my friends this quote from Elizabeth Gilbert because I have so much admiration for everyone’s ride on their own coaster. I look at what they are going through and marvel at how they have “handled it”.

The friend whose going back to work as a teacher, scared because its simply impossible to space out 15 kids in a small classroom. And whose job has changed over and over in the last few weeks. She may have no choice but to send her child to nursery though he is too young to stay away from others. She is battling with fear but handling it. She’s doing something good.

The friend encouraging her young child to go back to school so she doesn’t miss those final few days with her friends before the transition to high school. Her daughter is scared that it will be different and she is holding her hand through this while also working her full time job. She’s doing something good.

The friend working very hard all day but getting deep joy from popping down for a cup of tea and seeing her children more than usual. Getting through her to-do-list now she hasn’t got a long commute. She’s handling it. She’s doing something good.

Another who has to work full time with her husband out at his essential role but is keeping her kids out of school for the moment. Unsure that things are safe at school, she works with her son at her feet. She’s doing something good too.

Through all the earlier mornings, the homework fights, the million snacks, the technology battles- we have mothered on. Through all the video chats with family, baking cakes, playing outside and extra cuddles, we have mothered on.

So, if you are mothering on (or maybe muddling on,) then well done! Because you’re doing something good too.