Learning to Pace - 'It takes immense restraint.'
'She felt weak,
gravity's heavy effect,
yet she persisted.'
Learning to Pace.
The spoon theory is very well known within the chronic illness community, we may have 2 spoons a day or 6 it's dependent on the symptoms and energy levels felt of the day. We may use all of our spoons and then need to rest. Pacing is an important tool to use within the scope of the spoon theory.
In its simplest forms it is learning the art of stopping what one is doing to conserve energy to minimise big episodes. It’s a task not for the weak; it takes restraint and a lot of it. Pacing is the act of doing and tuning in when your body is saying stop, honouring it and having time of rest. No longer can we do multiple tasks during a day like we once could; now things are in bite sized pieces.
At the beginning if onset I couldn't pace, my body was in a complete rest mode. But as the year went on and after rehabilitation, I started to listen in to my body, do a task and stopping and when I could feel symptoms coming on. Blurry eyes, harder to breathe, cognition becomes lower, hand starts to tremor those are all signs for myself to stop along with the long list of other symptoms. I found it easier to bail out on things that I didn't find too important e.g. cleaning, because I knew my partner would pick up where I had left off. However it's more of a struggle to be doing a task that you really enjoy and having to stop. It's like having a window to do something before symptoms flood in; the window is small so use it wisely.
I had to learn to pace so I didn’t get stuck into the boom and bust cycle. There are at times I cannot pace that is normally in times of urgency or i have messed up schedules so there is more than one appointment during a week; a rookie mistake that I still at times do. And now at the managed state that I am, things also really have to be worth it like writing, drawing, cleaning, spending time with the kids. I don't do things that I find to be wasting of my energy levels, some certain things are not done or they are set aside for another day.
I found that within the start I honoured my bodies cues and stopped immediately and as time went on I would push against that bandwidth and I would know this certain symptom i can continue on for a few extra minutes; it was just dependent on the actual symptom. For example a hand tremor i can work with for a little bit longer than say a heart rate of 130bpm that's when it becomes a complete stop. I noticed that I gradually moved my baseline up a bit, those extra few minutes means a lot.
Pacing within daily things means doing the dishes then stopping and resting, reading for a while and resting. There is always a period of rest between things even having conversations, they are paced out. A big event like an appointment will still wipe me out for the rest of the day, so within days of appointments no other tasks are to be done. Those bigger days often lead to a drop within my baseline for a week; rehabilitation had said "If today bleeds into the next day, you are doing too much."
I believe the irritation and mental health aspects arise when we remember what we could do before. Sitting in a house that needs a whole clean, I can find myself annoyed and irritated that the old me could do it. I have to reframe it what can I do within my limitations? If I am in the lounge room, I will pick up some toys, wipe a few surfaces down pick up some rubbish and light an incense. Pride will come in as I'm enjoying the room; I did that.
It's odd to not take the act of cleaning as an annoyance anymore, prior to FND and Dysautonomia those tasks were a nuisance and something to just smash out and get done now it is a place of joy, pride and a nice time. Within onset I had thought I will never be able to do these things again and as my body stabilised i felt honoured to do these things again within my limitations.
My partner is so supportive he would do everything within that onset period the cooking, cleaning, looking after the three children, showering me, taking me to the toilet, trying to make me eat something he just did it all. But he understands now that it's important for myself to do things now that I'm no longer in that onset time frame. He will ask am I doing this because it needs to be done? Or are you doing it for enjoyment? If i say it needs to be done he will take over and if I say I'm doing this for enjoyment he will leave me be and check on me in five minutes. Whilst he is my full time carer he understands that independence is important and it would be a disservice to do everything for me. There is a list of 'Deeny approved tasks' and some that are just not for me to attempt for example taking the trash out isn't an approved task because I struggle with the stairs at our house, I at times forget and try to attempt and he b lines for the door "Whoa no, no, no this isn't for you to do." And he takes it out.
He has said to me many times if you have 40% and give 20% that's actually 100% and I'm proud of you for doing that. We work as a team I have my independence within certain tasks, we do them together or he stands by waiting to take over and we also have the no, no zone for me.
A big thing to understand is that FND loathes over doing and over exertion, soon a cascade of symptoms arise and you are stuck in this massive bust cycle, many days are spent with symptoms at a 10 when if one was to pace symptoms can be around at a level 5. Unfortunately there are days and weeks of symptoms being at a 10 and resting and non-doing doesn't help it at all. Within those times one needs acceptance and to understand it is only temporary. There are also within times of sickness e.g. a viral infection that FND will become worse so you have to first get through the sickness with rest then slowly and very slowly work back up to your baseline and stabilise again.
'Pacing gives our bodies a little rest and reset within our daily lives and doing tasks.'
'Pacing is the art and dance of start and stop, start and stop throughout the day.'
If you are able bodied please try to do this and see what feelings pop up, select a task you really, really love set a timer for ten minutes and then stop leave it all don't pack it up, just abandon it. Go sit for thirty minutes and listen in to your minds thoughts, it will surprise you how cruel the mind can be boasting this importance. After thirty minutes is up do it for another ten minutes and again stop. You will feel this restriction and lack of self-restraint within the mind and body; you will feel irritated and annoyed.
Understand that we have to do this in order to function lower than you do, we are feeling symptoms of dizziness, eye issues, Migraine, words don't make sense, our eyes are burning with fatigue and our bodies are in immense pain, we can't move body parts correctly. However we still do these things because it is now our normal.
We have to grapple with this daily, it's like working with a virus able bodied, but every single day of your life.
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