EXAMPLES OF PACING
PRACTICAL WAYS A PERSON WITH ME/CFS (chronic fatigue syndrome) CAN USE PACING IN THEIR DAILY EXISTEN
ONE OF THE MOST SIGNIFICANT THINGS you may want to remember with regard to management of your ME/CFS is you've heard the adage “Don't put off tomorrow what you can do today.” With regard to pacing and management of post-exertional symptom exacerbation; however, it might be better to follow the adage, “Put off today what you can do tomorrow”.
This can be frustrating because the amount of things that may build up for a person who is dealing with ME can reach the point of being overwhelming. However, given the damaging effects of post exertional malaise on the individual’s functioning and future condition, it is one of the most important things that one can do to not only prevent the current worsening of the PEM but also the overall worsening of the ME CFS.
1. Break tasks down into smaller tasks and break those smaller tasks down into even smaller tasks. If you are used to carrying say 10 lbs before you were ill, cut that down to at least 2 lbs or less at a time. Also keep track of the number of times that you are carrying those items from place to place, as well as the distance that you are carrying those items. Remember that when talking about the amount of exertion that you are being required to undergo for any particular task it's not only the weight of the items that you maybe lifting but also the number of times that you are lifting any number of items and the distances that you are carrying them because all of this adds up to use of energy in the body particularly in the musculoskeletal system that needs to be replenished. All of this adds up to drain your already depleted energy production system.
2. You can use the force of gravity to help enhance your ability to perform certain tasks. For example, instead of holding onto 1/2 gallon jug of milk as you're pouring it down the sink, open the jug and slowly bring it down onto the edge of the sink and let the milk drain out of the jug down the sink on its own. When filling jugs and bottles, use a funnel and hold the empty jug on the edge of the counter and then tip the full jug so that it slowly fills into the funnel and fills the other container.
If there is a tendency for a door to fully open by itself due to either air circulation or gravity then it can be useful to turn the door handle and allow it to fall open by itself. Yes, you will have to close the door yourself but it will cut your exertion levels in half. The same goes for the opposite, if there is some push that allows assistance when shutting the door, use it. It often may be of even better use if possible not fully closing certain doors (leaving them slightly ajar) and or not closing them at all so that you no longer need to grapple with them in order to access what's inside.
3. With regard to above, when putting away groceries or household items, it can be very helpful to split the contents of those items up into a smaller bowl or bottle, to help put them away and for easier retrieval.
Using plastic or paper bags or boxes to carry certain items across the room can help assist you with transferring that item across distances provided that the item in the bag or the box is still within your tolerable limits and the distance that you are carrying the item along with what you can tolerate for that day is within your energy envelope.
4. When stacking items in place either in a cupboard or the kitchen or in an office room or desk setting it could be most helpful to place items in a strategic positions so that you can most comfortably reach out for them from a sitting position and not strain yourself doing so, by using up extra exertion upon having to retrieve them.
You may place slightly heavier items closer to you or at the front of a shelf or drawer and somewhat lighter items in back to ease the ability to retrieve them. Try not to stack items too high on top of each other or they may fall down or block other items behind them. Always try to leave enough space for you to reach comfortably with your hands and arms to retrieve the items if you need them, only leaving enough room for error so you have to put perhaps a tiny bit more exertion into the task if you have to retrieve something further back.
5. If possible, create arrangements in the kitchen so that pots and pans, silverware, etc are available on a waist high table or as close proximity to either side of the stove for easy access. Placing silverware or other utensils in a box or silverware tray will keep them from falling off and getting mixed up with the pots and pans and other kitchenware.
Next to the sink, you can place a small box or plastic container where you can put all of your dish cleaning supplies and kitchen chemicals so that you don't have to bend down below the sink where most people put these supplies.
You can place your paper supplies on top of or around the microwave and use it partly as a storage table that way. Use a smaller garbage container in the kitchen and other rooms - 13 gallons or under - and when they get to about halfway full, pull them out and dispose of them for easier carrying and tolerance. This may cause some uptick in spending and garbage bags but if you have a steady income the cost may very well be worth it.
6. Keep brooms/dust pans/mops/Swiffers and other cleaning equipment out of closets and place them in convenient areas of the kitchen so that you don't have to access the closet door in order to retrieve them.
For items that are more most appropriate for storage such as electrical cords and other household equipment that you can tolerably move and store, buying a cheap canvas chair or camper chair and placing it in the closet and then placing these items on top of the chairs may be a very excellent storage idea and if possible leave the door ajar so that you don't have to turn the knob.
7. Using a scissors or utility knife to open packages and boxes can be an extremely helpful approach especially given how the force of having to pull open boxes and bags can tax the energy depleted muscles and cause the unset of post-exertional symptom exacerbation. Just be careful regarding the danger of being cut. In addition, with resealable bags sometimes cutting open a slit in the bag, particularly with household items and dry grocery, - so that one could reach in and retrieve items instead of having to pull the bag open after cutting off the tab - can greatly increase one's ability to access the items in that bag.
By the same token, cutting the top off of a box with a utility knife so that the items can be exposed if necessary or at least so the cover can be easily lifted to retrieve the items can also do wonders instead of having to go through the process of grabbing and pulling. Caution needs to be undertaken here so that one doesn't injure oneself by getting cut or harm the contents inside the box.
8. Use a shower chair and try to arrange your wash rags, soap, and shampoo so that you spend the least time possible standing up. Sitting down while washing the shampoo from your hair especially can conserve a lot of energy.
This all may seem ridiculous to those who don't understand ME CFS, and a lot of this may look like some type of OCD. But, given how crippled the cellular respiration and energy production systems are in people with ME CFS, taking the above precautions can many times make the difference between remaining upright and being able to enjoy some daily activities versus being thrown into bed and undergoing several days of PEM.
This is because valid scientific research going back to the early 1990s has revealed impaired cellular respiration in those of us with ME CFS resulting in the greatly inhibited production of ATP in our body cells due to the inability of the mitochondria to burn glucose in the presence of oxygen and create the needed ATP to satisfy our bodily energy demands.
Because the body cannot efficiently burn oxygen to produce the needed ATP in ME CFS, it ends up relying mostly on products of glycolysis in which glucose is used to produce ATP instead of oxygen. Glucose (sugar) may sound like it has a lot of energy to offer but that's only if that glucose is burned via oxygen by carrying out the full oxidative phosphorylation cycle (also called the citric acid cycle or Kreb’s cycle) all the way to the end.
If this cycle is interrupted, as it has been shown to be with ME CFS, and the mitochondria cannot complete that cycle, the leftover elements of glucose can only produce 2 to 4 molecules of ATP from a molecule of glucose versus 32 to 34 ATP molecules for every molecule of glucose when oxygen is able to be consumed in the process.
This creates an incredibly sensitive and fragile state of available energy production in those of us with ME, with the availability of only 1/10 to 1/16 of the amount of energy required for normal human beings. The energy is used up quickly and cannot be replenished as there is no store of ATP in the body cells to rely on once the initial energy is used up and there is only a tiny amount of immediate reproduction ATP to be broken down in the cell for energy.
Instead, the body has to try to slowly replenish what was lost, hence the need for not only pacing but rest between tolerable activities. If too many activities replenish too much energy at once, the body becomes unable to replace the massive energy deficit with rest and goes into post exertional malaise- in other words those of us with ME CFS get sicker when we overuse our very limited body energy availability.
The larger the over usage of energy, the larger the deficit, thus the more intense, more severe, and for more prolonged post exertional symptoms of exacerbation. The more severe and more frequent the periods of post exertional symptom exacerbation, the more damage that is done to the energy system that still flickers inside our bodies. Over time, continuing to hit these energy systems with constant periods of intense PEM can cause them to become even less efficient at producing any energy at all to the point that even glycolysis can be affected.
Therefore, if possible, it is vitally important to even in small things to take it as easy as possible energy wise for your body and always monitor for symptoms of post exertional malaise. If you feel like you are hitting the wall, if at all possible it is best for you to remove yourself from the activity if you can and rest in some way or another.
It may even be beneficial to not pick up that task for a few to several days afterward because your energy levels may be depleted to the point where that task will be triggering more post exertional malaise even when coming back to it after a few hours. Individuals have the responsibility of course to monitor the situation and understand when this is occurring and when it is not occurring. Many of these types of pacing activities and precautions work best when used by a person with severe to moderate ME CFS.
However, like any other kind of pacing, those with mild forms of the illness can find themselves benefiting from doing these types of things as they may free up even more energy that can be harnessed for other activities.
Bottom line of course being that, with the exception of very severe (bedbound) or catastrophic ME CFS, every level of the illness can increase their quality of life and keep themselves upright longer in some form or fashion with pacing.
https://patientresearchcovid19.com/clinicians-pacing-and.../
INTRODUCTORY PACING ON A PERSONAL LEVEL