(a friend of mine, who also has ME and is following a similar path as I am to recovery, has asked me to write more about pacing and how important the breath is during exercise of any kind)...
What energy reserves?
We just don't have them. The initial crash and subsequent time of rest and recuperation needed has taken a lot from us. The dysfunction of the autonomic nervous system results in a reduced ability to utilise the nutrients that we may eat and take in from the world around us. Leaving not just de-conditioned muscles but damaged cells and muscular tissue. The bone in a broken leg will heal in about 6 weeks, but so much of the muscle will need rebuilding over time, breaking in and creating new muscle cells to improve fitness. The unlikely thing about a broken leg is the loss of much fitness throughout the rest of the body. A little energy might be lost in the lungs and heart, but this is unlikely to be a dramatic loss. You can still pump iron with a broken leg, your torso can still lift weights, type, chop vegetables.
In ME patients energy is used every day, of course, we are still breathing and our hearts are still beating, cells are regenerating. The difference is that our bodies are damaged and have lost reserves, the cells are using energy from every breath we take. Oxygen comes into our bodies and is used straight away. The lungs must be healthy enough to take in what we need, the heart has to be strong enough to pump the oxygen around the body and the blood has to be healthy enough to provide the muscles with sufficient oxygen. The body doesn't have many untapped resources which will give us a little extra if we want to try a little more out of the blue, or three days in a row. (one day a short walk may be fine, but the reserves might have been used and will need to restock!)
The bodies of a long distance runner have been exercised and trained so well that they can utilise the oxygen that they are breathing for much longer, they also have vast quantities of energy reserves which are utilised during exertion and refuelled in between and during races. (the energy drinks that are now especially tailored for their needs). When they hit the wall, it isn't like us within seconds or minutes, it is after running for hours.
As ME patients our lungs need rehabilitation and retraining to take in oxygen efficiently, they can only give you so much! Even by breathing calmly and enjoying what you do, with a gentle, willing, happy state of mind, the reserves, lung capacity and even heart muscle isn't there to support what you may want to do.
Reserves have to be built up, rest is needed to encourage healing in the cells after exercise of all kinds; lifting clothes into the washing machine, a short walk over the road to feed the cat when the neighbours are on holiday.
Oxygen is providing our energy, giving the body the energy it needs and letting the reserves build up slowly and gently. As the muscles build and cells are healed with this energy, aerobic breath can move onto anaerobic breath- breath which is not giving enough oxygen to complete the task.
While you are still recovering you will notice that anaerobic breath has been used, maybe through as simple a task as a short brisk walk in cool fresh morning air. Walk more slowly and give your breath enough chance to energise the body, but also environment can be so key; cool air will exhaust the body quicker as the energy is used heating the lungs and won't get much further! Air from a higher altitude, will have less oxygen anyway. For all these reasons the chest can ache, but also nausea, headaches and lightheadedness may result, with muscle pain afterwards indicating that reserves were being tapped, which just weren't there! Rest will help this and everyone will be learning their limits week by week.
As time passes and tasks become easier, energy reserves will build and the need for aerobic breath can be discarded sometimes.
I'm learning to give myself a break, the research in this field is fascinating- not just for ME sufferers but those who are in rehabilitation of all kinds- and it has helped me understand my body much better.
Give yourself a break too, take things slowly, exercise with gentle movements and with lots of rest breaks; find the optimum environment for stretching the body- not too hot, not too cold. Don't go mad and stress the breath with anxiety so the lungs don't have a chance! Just take it easy and be aware. Make your carers aware of this, different days bring different energy amounts, the smallest thing can result in needing more or less help as the days go by- be aware of this too, your body is recovering and it needs love, comfort and a gentle guiding hand.
