How To Create A Pacing Plan

Pacing, the act of planning out one’s tasks to incorporate rest breaks & to stop you doing one activity for too long & exacerbating your condition is an important part of managing any chronic illness. I have been a spoonie (check out The Spoon Theory if you’re not sure what I’m on about here) for 18 years. Despite this, pacing was not something I knew existed until 2011, when I was seen by a hand therapist. Without knowing the term for it, my Mum has always tried to make sure I don’t wear myself out by planning our activities & checking I am ok while we do them, as well as forcing me to sit down if she thinks I’m pushing myself too hard. Unfortunately, with our only experience of pacing being Mum doing what she though best for me in each situation (which she was always able to read so well!) I never realised the importance of pacing in managing a long term health condition. I’ve always been able to come up with solutions to problems, but when your problem is pain or fatigue, it is easy (especially when you’re stubborn like I can be) to think that the best thing to do is to push on with life & manage as best you can. Otherwise, how will you get anything done, right? Wrong! What actually happens is that you burn yourself into the ground, do a sub-standard job while you’re trying to cope as best as possible & are then able to do very little once your body decides it hates you for ignoring it & throws a strop so big that it makes it impossible to get out of bed & achieve anything! With reducing my medication so Dan & I can try for a baby, the pain I have been experiencing has become much worse, both in terms of my migraine & my EDS. So I decided it was high time to revisit this & make a pacing plan that’s suitable for my current abilities & needs.

The following plans & thoughts are focussed on me trying to reduce my screen time to minimise migraine pain flares & to reduce the pain I have been experiencing in my hands, particularly because I now need to use them for my wheelchair, a task that is extremely taxing & painful for my shoulders, elbows, wrists & hands. In terms of activities, I want to be able to take part in Twitter chats. Recently I haven’t been able to because of the pain in my head & hands by the end of the day. Now that I have my wheelchair, I would like to get out of the house more. So I’ve planned my pacing with these activities at the forefront of my mind. I really hope this is helpful for those who haven’t come across pacing before or are finding it hard. Jo has some great tips on pacing on her blog JB Occupational Therapy, so I would highly recommend you check those out!

Standard Day

I’m not sleeping very well at the moment, so I’m going to plan for my standard day to start at 11am. If it starts earlier, that’s great, but if not I won’t feel like I’ve wasted precious time. I’ve decided to give approximate times, to show you how you can write your pacing activities as a timetable that can make them easier to stick to. If I wake up at 9am, these activities will start earlier & I’ll either be able to add in extra rest time or, if I’m feeling up to it, will be able to do an extra activity during the day. This is effectively my rough draft at the moment. I need to follow this pattern for a few weeks to see what works for me & what doesn’t.

11am: Set tweets for the following day & check in on my social media accounts

12pm: Shower

1:30pm: Eat lunch

2pm: Work on a blog post. I am going to allocate a maximum of an hour to this. I will time myself & force myself to take a break after an hour. If I am unable to manage an hour, I will not force myself to type for that long

3pm: Read & comment on blog posts. This activity, though still using my hands, is a lot less strenuous.

4pm: 5 mins yoga

4:15pm: Work on a blog post

5:15pm: Read & comment on blog posts. Look through Instagram, Pinterest, other blogs & websites for post & photography inspiration.

6pm: Make & eat dinner

7-8 or 8-9pm: Take part in one Twitter chat.

8 or 9pm: 5 mins yoga

9pm: Save posts on Bloglovin’ to my collections.

I will also be fitting in my role on the HMSA social media team & my management of the Leamington Chamber Orchestra social media & website into this schedule. I haven’t quite worked out how best to do this yet. I know I need to reduce the amount of time I am typing & looking at a computer screen though, so any tips on how to do this please let me know!

Teaching Day

Teaching Days are going to follow the same pattern as a Standard Day, but time spent typing will be reduced from 1 hour to 30 minutes.

Wheelchair Day

This must be followed by a Hand Rest Day. A Wheelchair Day will give me the chance to get out of the house for a few hours. I will set myself a limit of one Wheelchair Day a week, so as not to overdo it or hurt myself. The day of the week my Wheelchair Day falls on is going to have to be flexible – my doctors & hospital appointments are never of the same day of the week after all! I need to make sure that, unless for a hospital appointment where I have no control over the date, a Wheelchair Day does not take place the day before a Teaching Day. For the time that I am not out of the house using my wheelchair, I will follow the activities laid out in the Hand Rest Day. I won’t be participating in a Twitter chat on a Wheelchair Day.

Hand Rest Day

This type of day is intended to rest my hands as much as possible. This is necessary after a wheelchair day & would be helpful on days where my hands are particularly painful or I have hurt my shoulder. A Hand Rest Day would also be helpful the day before a Wheelchair Day to give myself the maximum time out before having to come home because my hands can’t manage any more. A had rest day also requires the minimum use of my crutches, so all activities will be mostly sat down. I won’t be participating in a Twitter chat on a Hand Rest Day.

Activities for Hand Rest Days:

Taking photos. This involves minimal hand activity as I will either use my phone to take pictures for Instagram or my DSLR with my tripod. I have to use my tripod because the palpitations I have with my PoTS mean I can’t keep my body still so photos end up blurry unless I use my tripod. I will also use these days to edit my photos ready to publish on Instagram. This is a fairly simple process but one I prefer to have done in advance so that I can see how my theme is going to pan out. I like to be organised with my Instagram as this lets me create new images in plenty of time so I don’t suddenly run out of material & have nothing to post.

Don’t use my computer. I will limit my online time to my phone. Using this puts less stress on my wrists as they move less. It also puts less stress on my fingers. I will limit myself to using my phone for 10 minutes at a time, with rest breaks in between. I’m not sure yet whether to set myself a minimum time for how long these rest breaks should be, so I’ll see how I go with it. On my phone I can use all the fun social media apps & read blog posts, so I will never get bored!

Yoga. Yoga is a great way to gently stretch out & do something physical that doesn’t put too much strain on the body. Fo the days where I am unable to put weight on one or more of my lower joint, I have a series of floor positions. I like to do 10 minutes of yoga a day. I will split this into 2 lots of 5 minutes so as not to do too much at once & hurt myself. It will also give me an activity for two rest breaks rather than one, as I tend to get bored & frustrated easily when I have nothing to do!

Write blog posts. This may sound like a contradiction for a Hand Rest Day, but hear me out. I’m going to make a concerted effort to get used to & use dictation software. This way I’ll be able to write blog posts to my heart’s content without having to move my hands at all! This will allow me to do other activities with my hands on non-Hand Rest Days & rest my hands on Hand Rest Days without feeling like I’m not accomplishing anything. Using dictation software is going to take some getting used to, but from what I’ve used so far it’s come a long way from the software I used when I was writing my dissertation in 2010 that would get 1/3 words wrong & leave me unable to work out what I’d said in the first place! As I get better & more comfortable with dictation, I will be using it on Standard Days too so that I can save my hands for the tasks where I’m not able to dictate.

Read a book. I have a neat gadget that holds my books open so that I don’t have to.

Obviously I can’t plan for every eventuality, but these days will make up the basis for my week.

Have you got a pacing plan & if so, how did you worked out the best way to pace for you & your condition(s).

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