Tag: fatigue

Stickman Communications’ Pacing Pack Review

This post is a review of some awesome products from Stickman Communications– a fantastic company that supports disabled people through a range of quirky designs and sassy explanations.

I use their line of communication cards on a daily basis and was lucky enough to be sent a ‘Pacing Pack’ to review by the genius behind the designs, Hannah Ensor.

After a couple of months testing here are my thoughts…

Pacing Magnet Set

These magnets are really quite groovy. They cover all the days of the week, times of day, intensity levels of activities and also meal, snack, and exercise prompts.

I found being able to timetable my day really useful and the magnets acted as good reminders to add on easily forgotten essentials; like exercise and down time. There are enough magnets for you to either plan a day in detail or block out a full week. Included in the pack is a black dry-wipe pen and eraser. The magnets are quite small so can’t hold much detail, but I would suggest writing in the pen around the magnets if you want to add additional information. These magnets are really fantastic for seeing what a day or week will look like when you are planning. They stick really well to magnetic surfaces and are beautiful bright colours. They were originally intended for fridges but I like to stick mine on my whiteboard in my room so I can see them during the day.

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Pacing Post-It Notes

The second part of the pack is this cute little post-it note stack.

 

They allow you to divide your day into three activity levels: ‘easy stuff’, ‘okay stuff’ and ‘challenging stuff’. I find these notes really useful because it encourages me to balance my day so that it is manageable. They stick really well to walls, boards, paper- anywhere you might need to be reminded about your plans.

Pacing Pack Crib Sheet

This is a handy little resource for people with fatigue problems and their friends and family. It is easy to understand, colourful and illustrated. Stickman Communications prides itself on its no-jargon resources, and this “Getting The Best Out of Life” sheet certainly follows that ethos.
 

I found this pacing pack really useful and I’d particularly recommend it to anyone who is newly diagnosed with a chronic condition or just learning to manage their illness. I’d also recommend it to any parents of disabled children who might need help with teaching their child how to plan around and for their condition. Good pacing and planning skills are vital for anyone with a chronic illness. I love the pack and would like to thank Hannah for allowing me to review it.

You can buy the pack here

For the whole range click here

Peace, Weakness and Bravery at Summer School

As I mentioned last monday, I was at a Drama summer school last week. Luckily I got all the nervousness and fear out of my system the year before, where I was painfully unsure of myself until a rapid turnaround on the wednesday. By the last day I was filled with happiness and determined to return next year, and be brave for every minute.

So I did. I arrived at the train station and gave my assistance the instruction to find ‘someone who looks like they are running a summer school’.

“So I’m looking for someone in walking boots then?” he replied. I made a non-comital hum in response. But sure enough there was a group of theatre school goers, fronted by a man in walking boots.

Reunited with old friends and meeting new ones I was certainly in my element. The aim of the summer school is to create a professional piece of theatre within a week. This year our theme was peace. I was over the moon to be on the ‘flying colours’ course again, working with the same tutors and many of the same young people who I got to know last year.

I don’t tend to start a new paragraph when talking about my sight, frankly it isn’t worth the bother, but I will make an exception this time. Being the only visually impaired person in a summer school of ninety-nine can make you feel like a bit of a burden sometimes. Theatre is fast-paced and I hate being the one who needs to slow it down to understand what is going on or what I need to do. I was lucky enough to be in the course with the same tutors and many of the same young people as last year. They understood that I wanted to do everything that all the others were doing: no exceptions. People who are new to the theatre school quickly caught on to this too. The tutors are brilliant, and I get on with them so well that if I feel the need I can confidently say: “Don’t you bubble wrap me!” (it has been done). I met new tutors too, including an amazing lady called E who did her very best to audio describe things to me- leaving us both in stitches.

The first half of the week consisted of devising. We were given vague outlines for us to form our own improvisations around. When time was up we performed in front of the group whilst being audio recorded by P, our writer. I particularly enjoy doing this because I just let my mind go and I can be whoever I want for a bit.

The tuesday night is always a long one for writer P. He  stays up all night piecing the audio bites from his Dictaphone into a juicy meal of a play. This year this meant that he had to write until 5am, at which point he got the other tutors up to cast the script. The next few days were hectic, sometimes rehearsing until 11pm until our act was tight. This year the play was a series of satiric scenes on world issues. This included a classroom of dictators and a gameshow for how they can kill their people best. It was very dark humour, but above our heads shocking facts were projected; showing how our acting didn’t stray so far from the truth after all.

Weaved into the summer school is religion. I am only semi religious, but I enjoy this part a lot all the same. It is my chance to have conversations with people my age I don’t usually get to have. For example: “Was Jesus really the ultimate image of peace?” and hearing those who just announce openly: “Jesus was really a pretty cool dude” is fantastic. At my secondary school that kind of thing would get you picked on for weeks.

So was I brave all week? No. In fact I was weaker than last year. A couple of years ago a consultant told my parents and I that I get tired. Not just the normal kind of tired which everyone gets. I get that too, but what happens when I get truly tired is my body and mind just can’t do anymore. It’s because of my eyes, not helped by my muddling mind- “she has to go three times around the lap when everyone else goes around once”. I could write a blog about this alone. Despite being told by multiple professionals that I need to be rigorous in my bedtime routine in order to keep healthy, I’ve always struggled to do this while trying to be ‘typically teenage’. Plus chronic insomnia from my messy mind doesn’t help matters. But for the first time since school I felt the effects of this additional tiredness setting me apart. Of course, everyone was tired at half ten when it was announced we had to carry on rehearsing for another thirty minutes. But my tiredness meant I got ill. Slumping and almost too tired to speak the first time this happened V, a tutor, told me: “You don’t have to be brave all the time you know”. I apologised, I got angry with myself, but then I accepted it. Yes, I can do everything everyone else is doing, but I just have to pace myself a bit.

A masking-taped stage brought our group’s journey to an end. The performance went really well and thanks to the masking tape no unintentional crowd surfing was done. The group was as close as could be. And I felt… free. Free to praise, free to try and free to be tired. I didn’t have to pretend I could keep going. I just had to be brave enough to admit that I had already given my 100%.

The group hug on the stage, which has high visibility tape around the edges.