I’m so happy to finally be taking part in A Chronic Voice’s monthly link-up! I have been silently following along from the shadows for months, then last month I finally wrote the post, but of course I waited till the very last day and actually missed the deadline by 4 hours because Sheryl works on Singapore time. 

This time I’m doing a bit better, I am writing this post with 6 days to spare. Wow, I must say I am impressed with myself. I am trying hard to get into a good and productive as can be routine, but before I delve into all that, here are this month’s prompts:

1. Reflecting (on the year that’s passed)
2. Aiming (to get out more)
3. Expanding (my social media presence)
4. Focusing (on making more art)
5. Refreshing (my soul)

More…

Reflecting… on the year that’s passed

2017 was a hard year for many of us, but among the losses and the fears that came with much uncertainty in the world, there were also many things to celebrate. My year was filled with quite a few wonderful blessings, too many to mention here, but I’ll focus on the three big ones:

A Family Reunited

My sister and I have been living together in England for a few years now, I have already been here for 7 years, but our parents lived in Italy. I would travel down to Italy every school holiday (I worked as a Teaching Assistant before I fell ill) and my sister occasionally came to London to visit me.

Once I fell ill, she decided to stay with me as my carer and then in January 2017 our parents decided to join us in England! It has been such a blessing to have them nearby and see them every week.

No Longer Bedridden

Yep, that is a big one! When my parents first arrived I was at my worst, I could’t walk 7 steps to the toilet without becoming utterly weak, shaky and just drained. I struggled to hold my phone, draw, read, sit up. I was almost completely bedridden for many months. 

I found Dr Myhill’s website through a support group on Facebook and decided to buy her book and implement her advice. It was a long and patient wait, but after 4 months I saw much improvement! 

New House, New Town

In May 2017 my sister and I, with the help of our amazing parents, moved out of London, out of our tiny studio flat (a single room with a kitchenette in one corner and a bathroom in a closet) to a lovely 2 bedroom flat in the North of England.

I love my new house, it had just been newly refurbished and everything was new, except my bed (Eeew! It has since been replaced). I have my own little sanctuary in my little room, where everything is close by for the bad days, and on most other days I can freely walk around the house – now that I’m no longer bedridden – and can have a change of scenery throughout the day. It is so good for the soul!

Aiming… to get out more

Although I had much improvement in 2017, I was still not well enough to do “healthy person” activities like going out of the house. I did go out a couple of times but in August I had a massive setback after my outing and I was stuck indoors for 5 months before I ventured out again just after Christmas!

That outing in December was lovely and I hardly noticed any payback, so I am now aiming to go out for a few hours once a month. I will attempt it for a few months and see how my body responds to such frequent excitement, if all goes well, I will try to go out once a fortnight – ooh, I cannot wait!

In the meantime I am also aiming to walk to my mailbox at the front door every day.

Expanding… my online presence

What started as an Instagram account to keep friends updated about my life and condition while I was housebound has become a tangled web of social media profiles alongside this blog. Raising awareness for conditions I didn’t know existed just a couple of years ago, encouraging others and being supported and encouraged by so many wonderful people in return. I love this online community!

Managing it all is quite exciting, but can become overwhelming at times with so many ideas ricocheting around in my head like a squash ball bouncing off the walls in every direction. I needed to slow down, take a step back and re-examine everything.

I decided this month was going to have to be written off as preparation, no use diving into chaos, not in my condition. So I didn’t set up my journal, I didn’t take part in all the New Year challenges or make any plans for January, but let it all go in favour of giving myself time to work out a schedule I can cope with. It’s the 24th today and I still haven’t finished my schedule, I think I’ve got Sundays to Wednesdays sorted.

The big new thing that I am excited about, as far as expanding my social media presence goes, is social media management tools. I have been watching tutorials, installing and trying all sorts of apps and I think I have come to a decision about how I can manage my accounts more productively. It all takes a bit of getting used to, so I am glad that this month I have given myself permission to not post things sometimes and be okay with that. I’m not usually okay with unticked boxed on my to-do list! Is anybody?!

Focusing… on making more art

When I first fell ill art was one of the few things I could still manage to do. It was also something that I didn’t really have time for on a daily basis while I was working, so for many years it took a back seat to lesson planning and tutoring. 

It is one of the blessings that came with this horrible illness – the time to sit and draw or paint. I often have shaky arms or can’t sit upright, but I now have the tools I need to be able to make art even if I’m reclined in bed or on the sofa.

I’ve also been testing my new schedule this week, and it looks like I can manage up to 20 minutes and then need a lie down before I attempt more desk time. This is super exciting! I have already made art on 2 different days this week – I love looking over at my desk and seeing all the colourful pieces waiting for their next session.

Refreshing… my soul

Something new I have started this week is early morning church service. Since I cannot go out anymore, I haven’t been able to attend church regularly since 2015 and eventually just gave up altogether. I just cannot handle so many people around me, so much movement and noise. 

Going to church was something I really loved while in London. I went on Sundays and Wednesday evenings. I also taught in Children’s ministry, but since I fell ill it just became impossible to go.

It wasn’t until this week something reminded me of a church I used to listen to online while I lived in Italy and had no access to a protestant church that I looked them up again and started listening.

I now spend an hour each morning listening to recordings of Bible studies and have really been enjoying it. I can manage to listen for an hour, and it’s fun and interesting, I find it much harder to read for much less time than that with brain fog. This has really been a refreshing addition to my days. 

It gives my body time to slowly wake up while I lie in bed, move my legs, stretch a bit, and take notes. It changes the whole dynamic of my day. Who wouldn’t want to start their day with strength and peace? 

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