Coping with Bone Tired

I am learning that colourful similes really do describe fatigue

Have you ever felt bone-tired, held a heavy burden, could hardly drag your head from the pillow or felt like death?

There is some colourful language to describe fatigue. When I used these terms in the past, I thought they described how I felt. Perhaps when I was drinking alcohol I would raise my head and groan, feeling like death. To be honest booze does make me feel so rough I gave it up. But now I know, I was being dramatic on those days. Even after a tougher week with my son’s sleep, I would feel particularly sluggish and use these similes. But it wasn’t until I experienced this fatigue that I really understood these phrases.

Words can be inadequate, even for someone who enjoys writing, to describe how our body can give up on us. What I am finding helpful, as well as now understanding completely the term bone-tired, is to listen to my body. I mean really I have no choice as there are days when I have to just stop. Whatever my aches and pains are, I have to pay attention much more than I have in the past because I know enough now of the boom and bust cycle to not push through aches, pains or tiredness.

This week I made it to the office, promptly to be laid up in bed again. I am suddenly getting leg cramps added to the aches in my arms. A sluggish existence. No really, like a slug, more able to move horizontally than vertically. And that’s all part of the game of learning to live with fatigue. Listening to your body and learning that when you have to stop like this, you took it too far.

And I am learning to cope. I have already written about using things that soothe me. This weekend it’s a Sherlock Holmes audiobook, familiar, satisfying and funny they have helped as I lie down. But here are a few other things I am using to help:

1. MEDITATION I have used meditation for years to help with anxiety. I love the Mindful in Minutes and Hay House podcasts and an album Growing Mindfulness by Michelle Duval, free with my Spotify membership.

2. SHAKTI MAT A new acquisition, a small spiky yoga mat. You lie on it for 20 mins and it is supposed to release pain-relieving dopamine. I am a bit obsessed and confused that I find it so relieving.

Me, but less glamorous

3. MEDICATION While holistic practices help, taking my medication and being on top of having it at certain times of day is got to be one of the best things I can do for myself. I have built new medicine into my routine by pairing it, for example taking my inhaler then brushing my teeth. This is a technique Gretchen Ruben recommends for habit change and it helps my foggy brain remember this crucial step.

4. TA-DA LISTS! It’s hard not to focus on what you haven’t achieved when you are lying down a lot. But instead I am trying to list what I have managed at the end of each day.

5. NAPS I think I have to be honest because I am sounding like I manage to do a lot despite being laid up but the most obvious way I am coping is by sleeping more, including naps. Too simple to say really but I wanted to acknowledge that to cope with fatigue, you really have to others around you. Support from work that you do shorter days, support from someone else to look after your child, the TV as a babysitter.

I feel lucky that it’s not as bad as it could be. I am really very tired but hoping that I will learn what works for me and build up more energy each day that I rest. Eventually I will learn to cope.

Being Just a Little Creative

If my energy is low, can I still be a little creative?

The Bank Holiday weekend is stretched before us in the UK and we haven’t made plans. There may be more options now the world is opening up but a rainy day and little energy means another weekend at home for us. The boys are entertained by snooker and youtube and I wonder if I can sneak in a little Artist’s Date?

On impulse, I visited a craft store last weekend and I drag out the card blanks. The coordinated paper packs soothe me with soft Spring colours. It probably doesn’t look much now I am finished but since buying a few supplies, this is the second card I have made this week. One has gone off as a birthday card and this will be a thank you. I have long thought that card-making was a good craft for me. A simple beginning, middle and end. They will never look like a professional job but that’s not always the purpose. Sometimes, it’s to make something simple that pleases you.

The reason Julia Cameron encourages you to take two hour “Artist Dates” each week in The Artist’s Way is I think to widen your perspective on life, maybe take the occassional risk. At the beginning of the pandemic, I played a little in papercraft by creating a collage and this too helped me. The ideas I am trying are more simple bit I do get satisfaction from the play of it all. And I think the idea that if you live your life in a creative way, it starts to impact on all areas of your life is very appealing to me.

In real terms it meant I sat for half an hour this week and wrote a scene that’s been missing from my work-in-progress. A piece of the puzzle that clicked into place. And that was after my first attempt at card-making for several years. I can’t say that one created the other. That crafting led to writing. But allowing these little outlets for creativity into my routine, may help me work even for small amounts.

Though I am still balancing my health concerns and everday life, it is heartening to see how creativity can help me with more than just my work but my mind too. As Elizabeth Gilbert explains in Big Magic: Creative Living Beyond Fear, that creativity has to have somewhere to go.

Possessing a creative mind, after all, is something like having a border collie for a pet: It needs to work, or else it will cause you an outrageous amount of trouble. Give your mind a job to do, or else it will find a job to do, and you might not like the job it invents.

Elizabeth Gilbert, Big Magic: Creative Living Beyond Fear

I think the key for me is knowing what I can do right now and letting out the creativity in short, little bursts.

Have you anything creative planned for the weekend?

Reuniting is the best Self-Care

Real life is returning

I am a little late updating the blog this week because real life is on the return. For now, restrictions have lifted a second time and we have been allowed to travel to see family outside and go back to shops. I have been busier than I have been for a while and had to work hard to get the balance right as I am still managing fatigue.

I think it is interesting to reflect on the very first things I wanted to do now that life can return somewhat. As well as getting my hair cut for the first time for seven months, I did wander into town. It was so busy and I had little desire to shop (a cardigan may have slipped into my bag, I confess.) But I did feel the need to see people I know so I visited my old work place to catch up with friends who work there. Reconnecting, even if it is just the casual trips to cafes or seeing a familiar faces, felt like such a tonic.

I recently took a self -care assessment from Therapist Aids. I could identify a few areas where I had a deficit at the moment but by far my lowest score was in the socialising category. There’s a great explanation on the Get Self Help website about how many elements feed into self-care, and interacting with others is part of the picture. It’s surprising but studies show that social contact, even if it’s the everyday pleasantries with people in your community, can improve your life. An article in the Washington Post about the studies show it is “psychologically protective” to have casual daily interactions. And all of this we have been missing a lot of the last year.

Socialising can be simple interactions (but with masks of course) Photo by cottonbro on Pexels.com

Missing people has become a difficult part of the year. And so the most important part of the week were the two separate trips we arranged to see family. On neither occasion could we manage long walks, what with my fatigue and my son struggling to be back in a busy environment, but to be together as soon as we could was so important. Even though with kids around you can barely finish a sentence together, there is a calmness that comes with being around people who “get you”. I have always enjoyed visiting with my closest family members, but there is an added layer of appreciation after we have been forced apart for so long.

I think that given the busy week I would expect to be very tired this weekend but so far I have been alright. I think it reminds us that doing the things that nourishes us, boosts our happiness, really does have an impact even when there is an actual physical problem that causes our tiredness. In amongst I have managed two 45 minute sessions of writing. So not only does self-care allow me to manage my fatigue, it is helping with my creativity too. Despite it all, I really can see the glimmer of normal.

How to give your brain a break

Seeking soothing activities recently, I have found some things are much gentler on the brain than others

I was writing recently about how important audiobooks have been over the last year. It has been really important to give myself permission to ‘count’ these books as reading. It motivates me to have a reading goal but the realistic picture has been I can concentrate much less at the moment. Since getting ill in January, I have had post viral fatigue to manage. And this includes giving my brain a break.

In fact I haven’t had much choice about giving it a break as I often find apart from first thing in the morning, my brain is sluggish. Learning more about pacing to cope with fatigue, I am realising that this early morning burst of reading or writing is most likely impacting my ability to do more the rest of the day. Reading is an activity. Sounds such a simple thing to say but until you realise it has an impact on your cognitive functioning, you may not appreciate lying on your bed reading is doing something!

Another revelation that may be of no surprise to anyone else, you have to relearn how to rest. Again, at times, I have no choice but to rest. Lots of lying down at the moment! But we are so used to being busy, cramming in our friendships through social media, using any spare time to read or listen to podcasts to learn something. Stopping it all and prioritizing what you want to spend your energy on is a real skill.

Find What Soothes You

So, to give my brain a break, I am becoming very aware of what soothes me and also what takes too much brain power. Here are some ideas of my soothing swaps:

  1. Audiobooks: A lot of relistening. I have recently started the complete collection of Jeeves and Wooster read by Stephen Fry, not only do I know the stories, they are light fippery that I can enjoy without worrying too much about concentrating. Gentle humour keeps it light but means I am not bored.
  2. Classical music: there are a lot of soothing playlists readymade on Spotify and Classical Chillout has helped me relax. Sometimes even lyrics are too distracting. Short pieces of classical music often whisk you away somewhere.
  3. Short bursts of reading: where I can manage reading, I try to tead from my “comfort reading” list such as a Maisie Dobbs mystery which though often tender, have also a cosiness about them. It’s the perfect time to revisit old friends.
  4. Beautiful costume drama. I enjoyed the steamy romp of Bridgerton earlier this year, but honestly right now I am more in the mood for the gentler stuff. Rewatching, like relistening and rereading is very soothing because there are no suprises. You can’t beat the BBCs Pride and Prejudice or the Emma Thompson Sense and Sensibility.
  5. Doodling in a sketch book. I am even finding colouring in detailed patterns in a colouring book too much at times. I have been doing warm up drawing exercises in a sketch book, shading and drawing circles. Circles are actually a zen practice and I can see the appeal as you never truly know until you finish how well you have drawn it.

What I discover as I write a list of what helps me is that I am looking for comfort in familiarity. But also, that my brain is one that still has to be entertained. As I find this balance of what does and doesn’t work for me, I wonder if I will ever find I can just do nothing?

It may be time to revisit the Bored and Brilliant project again and consider Manoush Zomorodi advice that “Boredom makes people keen to engage in activities that they find more meaningful than those at hand.”

Do you ever just do nothing?

World Autism Awareness Day

In our house we are always aware and try to stay positive

In this week alone I have attended appointments, analysed behaviour, dealt with anger and anxiety by lying down on the floor. And when not talking a lot about buses, I have volunteered with a charity supporting parents and attended online seminars to help us. Because everyday in our house is an Autism day. So as I celebrate World Autism Awareness day, I think that about how it makes our lives in some ways a little different. It also keeps us busy and on our toes.

Even in the busiest weeks like this, I think about the other elements that are just joyful. We love stimming in our house, self-stimulatory behaviours like bouncing, flapping hands, humming that gives lots of feedback to his sensory system. It can soothe, help processing and just be for fun.

He loves to bounce on an OT ball because it feels good. He asked me to video how high he was going on the ball now because he thinks he almost touches the ceiling. It is alarmingly high now and the images are a blur of excited body bouncing. There was so much to celebrate with school term finished and a new update for a game he likes. And I love to see him happy like this.

We also like to celebrate neurodiversity in our house. He has such indepth knowledge around his special subjects. The great long lists of motorways or bus types or bus routes that litter our house capture him with an admirable passion.  I love how his type of brain can focus on its interest and learn so much. Steve Silberman talks about in his book Neurotribes. I don’t of course prescribe to the Rainman stereotype of autistic intelligence, but where brains do work differently, surely we can value that. When I think of what he is able to remember, because his visual skills are stronger than mine, and how despite his attention impairment, he can sit at something he likes for hours, I can’t help admire this trait.

Finally, we are a house that tries to stay positive but I hope also honest. I have written before about sleep disturbances and anxiety issues that do impact our life. World Autism Awareness Day is not a day to complain that it is hard. More to say I wish some elements of his condition didn’t make his life hard. I am reminded of a meme that says “He’s not giving me a hard time, he’s having a hard time.” Some of the challenges can be very wearing and I don’t always handle them well. But there is one thing I am certain of, our lives are so much better for our excited, bouncy, joyful bus-lover. And the World is much better for him too.

Happy World Autism Day! Let’s today and all days celebrate!