I am sure many of you are aware of the report (link) which came out in the UK a couple of weeks ago about the different ME/CFS treatment options. I would like to comment on this in as frugal a way possible, but come from every angle too, so forgive me if this post is longer than my usual posts!
Its title is as follows:
Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
So it is looking at four different treatment options, with a focus on specialist care and how each of them appear as a cost-effective way to treat ME.
The "long term" description is paramount here, looking at fatigue and physical activity improvement over one year. (in terms of ME, one year is on average short-term!)
It also takes into account the quality-adjusted life years. Cost-effectiveness looks at the different length of appointments taken with doctors and costed per hour, also price of any medication. Also taken into account is loss of gender and age specific man-hours at work or because of fatigue while at work and time taken by informal care from family, friends and volunteers- all of which is costed by the hour. Pensions or disability benefits paid were not added to the equation.
The conclusions were that CBT and GET were the best options using these criteria.
All treatment options will work for someone and if you are newly diagnosed, if these options are suggested for you I suggest you become aware of your needs and try them if advice is given in that direction. If you have to go to three, five, ten different GPs to find someone who will recognise your illness and help you find solutions (this is true for any illness!) then do that. The doctor who has an understanding of your symptoms will guide you in better directions than the doctor who is disbelieving.
Charities and media have immediately jumped on the band wagon and started surveys of their own denying that these two treatment options will work for the majority. The difficult point here is that charities, websites and forums for ME tend to pick up the patients who have tried options, and not had much success, so are searching for new ideas, or are trying different options for a vigorous symptom before trying anything else (like I was with my seizures). Also patients who have been ill for many years, so the body has deteriorated more than it would have after just an initial crash, for these patients it is likely that more intricate or tailored treatment will be needed as secondary symptoms and illness might have taken hold. Charities will bring out surveys and have done in the past about how effective different treatments are compared to each other and it is more likely to hear from patients who have not had success than those who have and are out in the big wide world wanting to forget that part of their life!
Different stages of the illness need different options. For example when the first crash happens the last thing you need is increased activity week on week, restricted activity for as long as it takes is better encouraged here, even reduced activity and regular rest periods. (All these are examples of GET and with an experienced guide you will have the right options at the right times) But if this as addressed as continual rest with no activity and is continued for a year, like in the report's option of Specialist Medical Care (advice for coping and symptomatic pharmacology), then this may be too long. After as little as three months or as long as nine months, if the patient's needs are assessed and GET is then begun, the results might be much better. So two options within one year, for this patient, is much more effective than choosing between them. Once the year has gone by, maybe another 6 months of GET will be ideal, but you can't live your whole life by a stop watch, doing and resting for specific times, so awareness of the body is essential (Adaptive Pacing) and realising what went wrong to put your body in this state in the first place- CBT might help here- could be the necessary catalyst to full recovery. All four options have been used in total, and adaptive pacing might be needed and utilised for a lifetime as it brings a much better awareness of the bodies needs.
We have to be aware as an ME community that all research is good research, but probably cost-effectiveness maybe not such a good criteria to add into the hypothesis!
ME comes in many guises. New research released in April of this year shows how breast cancer can now be given 10 different diagnoses and 10 different treatment plans (link). ME research is currently concentrating more on the symptoms and individual parts of the body.
Holistic medicine has become the watch word of the medical community just like knitting has become the watch word of the craft world. When the body is looked at as a whole person, an individual, the resulting conclusions can be much clearer. WIth as in-depth an illness as ME we are nowhere near finding a single term for the illness. I believe this umbrella term might hang around for a while, but we are much more likely to have a different form of individually tailored healthcare available to us soon as cellular level understanding improves. We have immune system, autonomic nervous system and mal-adaptive stress response dysfunctions, we don't have Myalgic Encephalomyelitis.
So they are my conclusions based on the bare facts of the study and my knowledge of the illness. Don't dismiss any research of ME without reading it yourself. You are the only one who can have your opinions! Lots of surveys of a similar nature have come out in the past and will continue to appear in the future. Remember too that red wine and chocolate should be consumed every day, or should they, what did the last survey say?! trust your instincts and make your own choices.
Showing posts with label Pacing. Show all posts
Showing posts with label Pacing. Show all posts
Monday, 13 August 2012
Saturday, 21 July 2012
Energy Reserves
(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.
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.
Tuesday, 3 July 2012
Unreal
I heard someone say this word the other day. Some of you will know exactly where I am coming from when I say I have so much familiarity with 'unrealness'
For years I had bouts of being unreal. It might last for hours, days at a time. Sometimes weeks of unrealness would encompass my whole being.
The lightheadedness, dizzy spells, lack of focus in the eyes and weird feelings in my mouth. Like the saliva had taken on a new form of being; disappeared and comeback from an alien's mouth. The unreal feeling is something that a lot of ME patients will connect with. It is a state of not knowing where to turn, who to ask questions of or whether or not, if the mouth is opened, the words will actually move through the nervous system from the head to the mouth. For me, when it went this far I was in a scary place.
I did too much last week. talking to too many people, or attempting too many exciting things in my life, too much of things one after the other. Twice I sat in bed with the TV on and DVD player ready to play a familiar film- Sleepless In Seattle- to give me a focus, a centre, a place of comfort. I know the words off by heart. I can find an easy road back to speaking and understanding language and laughter just by hearing the same words whenever I am in this state. Unreal-ness has come to me over the years and I have used different films to find the focus- When Harry Met Sally was one of the first, also Steel Magnolias, Pride and Prejudice with Jennifer Ehle. I even used to watch the snooker and cricket for hours at a time. Really starting to understand the game more than ever, to find a focus and a way back to cognitive awareness.
So I need to continue at my pace, realise how much little things can influence my day to day existence. It isn't just a case of 'over-doing it' it is realising how many little things too close together can make such a big difference. Every little thing has different consequences- I can do daily beginner yoga classes in my living room, alone, quiet; but I can not do large amounts of socialising, visual stimulation, noise and emotion. As ever it is not pushing too far, too fast. Having patience and taking one step, or even half a step, at a time. Assessing each day as it comes and not being afraid to say "no".
For years I had bouts of being unreal. It might last for hours, days at a time. Sometimes weeks of unrealness would encompass my whole being.
The lightheadedness, dizzy spells, lack of focus in the eyes and weird feelings in my mouth. Like the saliva had taken on a new form of being; disappeared and comeback from an alien's mouth. The unreal feeling is something that a lot of ME patients will connect with. It is a state of not knowing where to turn, who to ask questions of or whether or not, if the mouth is opened, the words will actually move through the nervous system from the head to the mouth. For me, when it went this far I was in a scary place.
I did too much last week. talking to too many people, or attempting too many exciting things in my life, too much of things one after the other. Twice I sat in bed with the TV on and DVD player ready to play a familiar film- Sleepless In Seattle- to give me a focus, a centre, a place of comfort. I know the words off by heart. I can find an easy road back to speaking and understanding language and laughter just by hearing the same words whenever I am in this state. Unreal-ness has come to me over the years and I have used different films to find the focus- When Harry Met Sally was one of the first, also Steel Magnolias, Pride and Prejudice with Jennifer Ehle. I even used to watch the snooker and cricket for hours at a time. Really starting to understand the game more than ever, to find a focus and a way back to cognitive awareness.
So I need to continue at my pace, realise how much little things can influence my day to day existence. It isn't just a case of 'over-doing it' it is realising how many little things too close together can make such a big difference. Every little thing has different consequences- I can do daily beginner yoga classes in my living room, alone, quiet; but I can not do large amounts of socialising, visual stimulation, noise and emotion. As ever it is not pushing too far, too fast. Having patience and taking one step, or even half a step, at a time. Assessing each day as it comes and not being afraid to say "no".
Saturday, 9 June 2012
Shopping
I love the internet for this reason if nothing else!
I can and do shop for everything on-line. From shoelaces to spaghetti, from lightbulbs to lawnmowers. The funny thing is that when I search and search for something, which I think I should easily pounce on in the local shops, I end up going straight to Google after three weeks of desperation and find it after a few clicks. We dropped a melamine tray last summer, which was intrinsic to my way of life at that time. Eating in bed, on my lap, was the only option. I needed my head, neck and back supported completely and a few thick layers of duvet and blanket over my legs. This tray smashing on the kitchen floor gave us a reason to leave the house. 'Oh, great' I thought,'I can enjoy choosing one from a shelf in a department store, or kitchen shop'. "Oh, no I couldn't"- I could hear the audience chanting back at me, pantomime-style, as we couldn't find suitable alternatives anywhere. After all this excitement of going to a different shopping centre and collapsing in bed week after week, I went back to my favourite stalwart Amazon, and there they were teasing me from the page!
Researching shopping is also a must when finding clothes or shoes as the process can take such a long time and a lot of energy otherwise and I cannot take a long time, or a lot of energy! (neither can my husband's patience!) If I would prefer to try the items before buying, or the postage costs are extortionate, I find the shops, check their stocks and we appear, try and buy, if they are suitable.
I now know the local shopping centres which are accommodating to my needs; good parking facilities, flat pavements or walkways, without cobbles and only slight slopes for using the wheelchair. So always check which town we will visit to achieve the most.
The beauty of me being at home gives me the opportunity to have items sent through the post and returned if necessary. Larger items (most recently the food mixer and a new toaster) which we would otherwise have to balance on the back of the wheelchair, or on my lap, can be delivered without concerns of no one being home to sign for the items.
Food-wise I shop regularly using iPad apps, which give a quicker shop- as if I was in the store. I can usually read full lists of ingredients and also choose most of my shopping from the monthly offers. Some of the more exclusive foods can be found in health-food online shops with supplements and, as with searching out the trays, I might be going in dozens of different shops before finding what I prefer.
Thanks to Google, Amazon, Ebay and many others, my life can be a lot more focused on recovery and careful pacing than it might be otherwise!
I can and do shop for everything on-line. From shoelaces to spaghetti, from lightbulbs to lawnmowers. The funny thing is that when I search and search for something, which I think I should easily pounce on in the local shops, I end up going straight to Google after three weeks of desperation and find it after a few clicks. We dropped a melamine tray last summer, which was intrinsic to my way of life at that time. Eating in bed, on my lap, was the only option. I needed my head, neck and back supported completely and a few thick layers of duvet and blanket over my legs. This tray smashing on the kitchen floor gave us a reason to leave the house. 'Oh, great' I thought,'I can enjoy choosing one from a shelf in a department store, or kitchen shop'. "Oh, no I couldn't"- I could hear the audience chanting back at me, pantomime-style, as we couldn't find suitable alternatives anywhere. After all this excitement of going to a different shopping centre and collapsing in bed week after week, I went back to my favourite stalwart Amazon, and there they were teasing me from the page!
Researching shopping is also a must when finding clothes or shoes as the process can take such a long time and a lot of energy otherwise and I cannot take a long time, or a lot of energy! (neither can my husband's patience!) If I would prefer to try the items before buying, or the postage costs are extortionate, I find the shops, check their stocks and we appear, try and buy, if they are suitable.
I now know the local shopping centres which are accommodating to my needs; good parking facilities, flat pavements or walkways, without cobbles and only slight slopes for using the wheelchair. So always check which town we will visit to achieve the most.
The beauty of me being at home gives me the opportunity to have items sent through the post and returned if necessary. Larger items (most recently the food mixer and a new toaster) which we would otherwise have to balance on the back of the wheelchair, or on my lap, can be delivered without concerns of no one being home to sign for the items.
Food-wise I shop regularly using iPad apps, which give a quicker shop- as if I was in the store. I can usually read full lists of ingredients and also choose most of my shopping from the monthly offers. Some of the more exclusive foods can be found in health-food online shops with supplements and, as with searching out the trays, I might be going in dozens of different shops before finding what I prefer.
Thanks to Google, Amazon, Ebay and many others, my life can be a lot more focused on recovery and careful pacing than it might be otherwise!
Friday, 1 June 2012
Discipline
I should be proud of myself that I am holding back, that I am deciding to choose discipline over the desire to tidy, clear, beautify the garden. Holding back is so difficult. I'm also deciding to sit down instead of standing, to sleep instead of visit a friend. But it is so difficult.
I'm taking a splint off my leg and bringing it back to life with physiotherapy and gentle exercise. I am regenerating my whole body- not like Doctor Who; in a few minutes- probably over a few years.
Discipline is happening in every part of my life and I have to be so careful. Also, thanks to the new pacing information I have been reading, I know I have to push the limits occasionally. The patients who heal faster and more securely are the patients who have a few set-backs along the way. Set-backs every 4-6 weeks rather than every week, so gently testing the ground as progress continues. Muscles grow stronger by being pushed, broken and then healing just as a young tree trunk will be stronger if it is unsupported, so allowed to sway in the wind. Important aswell is resting; not necessarily sleeping but sitting or lying and doing nothing, which will aidthe healing on a daily basis. Matching that with doing a little more activity regularly is confusing!
I do not like these healing times, so much more rest is needed as I test the water. Just a little more activity last week, with the hot weather, sent me to bed. It gave me the realisation that I need to be careful for another few weeks and let myself heal, before stretching that little bit more again.
I'm taking a splint off my leg and bringing it back to life with physiotherapy and gentle exercise. I am regenerating my whole body- not like Doctor Who; in a few minutes- probably over a few years.
Discipline is happening in every part of my life and I have to be so careful. Also, thanks to the new pacing information I have been reading, I know I have to push the limits occasionally. The patients who heal faster and more securely are the patients who have a few set-backs along the way. Set-backs every 4-6 weeks rather than every week, so gently testing the ground as progress continues. Muscles grow stronger by being pushed, broken and then healing just as a young tree trunk will be stronger if it is unsupported, so allowed to sway in the wind. Important aswell is resting; not necessarily sleeping but sitting or lying and doing nothing, which will aidthe healing on a daily basis. Matching that with doing a little more activity regularly is confusing!
I do not like these healing times, so much more rest is needed as I test the water. Just a little more activity last week, with the hot weather, sent me to bed. It gave me the realisation that I need to be careful for another few weeks and let myself heal, before stretching that little bit more again.
Sunday, 27 May 2012
One Pace At A Time
Oh how so many ME patients will be saying "pacing, I love it, I hate it"!
To an ME patient, pacing is varied and confusing. It can be taken back to the simplest terms of walking at different speeds. I have had ME for 24 years and still struggle with it as the pace at which I walk changes from day to day and only during a time of restrained stability is it nearer constant. Pacing is described and proven by ME charities as the one way that patients can improve their health and, as the name suggests, it is all about taking one step at a time; winning the race as the tortoise rather than the hare.
The finer principles are very personal and requires listening to the body as much as following a scientific model. As I mentioned before, finding stability is the first step; by realising your limits the progress options show themselves more clearly. I found stability by writing out tick charts, of the simplest things I do everyday: watching an hour's TV, doing 30 minutes knitting, 15 minutes yoga, 10 minutes on my feet, 20 minutes reading emails. I discovered how little I was actually doing and therefore did not push myself. If I wanted to leave the house it meant at least three ticks: dressing, leaving house and either car or wheelchair journey (and as I was only achieving eleven or twelve ticks every day this would be a big thing) This would usually suggest also being in the company of another person, (which can be very draining) and sitting on a chair without a head support- two more ticks! It might seem very severe but for those days it was important. By pacing myself I did not enter the realms of twenty ticks in one day leading to a week of eight ticks every day. This is known as crashing or dipping, symptoms increase, exhaustion sets in and is not a nice experience!
I have been using my Tick Charts for years. I came across another form of this last year and it is a very good example of how to explain an illness such as ME to a friend. It uses spoons instead of ticks (The Spoon Theory- hunt this down on a search engine or on butyoudontlooksick.com, as it is a copyrighted piece, links are not allowed)
As progress continues and I use more and more ticks and spoons I am searching out more theories and information about pacing. (I'm currently using about 25-30 ticks each day!) This is where my knowledge has not been complete in the past and now that I have more clarity in other parts of my recovery I know how important pacing will be- the muscle damage and cellular deterioration will rely on my giving rest time and healing pacing, significant thought. The general principles are obviously very similar, but as many tips as I can find will be helpful. I have been searching out websites and documents this week and have amassed a large body of pacing information to research. Even though it might seem extreme I feel that the more input I have, the more I can weed out the unnecessary repeats and find a few new ideas which can do nothing other than help me as I go. Wish me luck!
To an ME patient, pacing is varied and confusing. It can be taken back to the simplest terms of walking at different speeds. I have had ME for 24 years and still struggle with it as the pace at which I walk changes from day to day and only during a time of restrained stability is it nearer constant. Pacing is described and proven by ME charities as the one way that patients can improve their health and, as the name suggests, it is all about taking one step at a time; winning the race as the tortoise rather than the hare.
The finer principles are very personal and requires listening to the body as much as following a scientific model. As I mentioned before, finding stability is the first step; by realising your limits the progress options show themselves more clearly. I found stability by writing out tick charts, of the simplest things I do everyday: watching an hour's TV, doing 30 minutes knitting, 15 minutes yoga, 10 minutes on my feet, 20 minutes reading emails. I discovered how little I was actually doing and therefore did not push myself. If I wanted to leave the house it meant at least three ticks: dressing, leaving house and either car or wheelchair journey (and as I was only achieving eleven or twelve ticks every day this would be a big thing) This would usually suggest also being in the company of another person, (which can be very draining) and sitting on a chair without a head support- two more ticks! It might seem very severe but for those days it was important. By pacing myself I did not enter the realms of twenty ticks in one day leading to a week of eight ticks every day. This is known as crashing or dipping, symptoms increase, exhaustion sets in and is not a nice experience!
I have been using my Tick Charts for years. I came across another form of this last year and it is a very good example of how to explain an illness such as ME to a friend. It uses spoons instead of ticks (The Spoon Theory- hunt this down on a search engine or on butyoudontlooksick.com, as it is a copyrighted piece, links are not allowed)
As progress continues and I use more and more ticks and spoons I am searching out more theories and information about pacing. (I'm currently using about 25-30 ticks each day!) This is where my knowledge has not been complete in the past and now that I have more clarity in other parts of my recovery I know how important pacing will be- the muscle damage and cellular deterioration will rely on my giving rest time and healing pacing, significant thought. The general principles are obviously very similar, but as many tips as I can find will be helpful. I have been searching out websites and documents this week and have amassed a large body of pacing information to research. Even though it might seem extreme I feel that the more input I have, the more I can weed out the unnecessary repeats and find a few new ideas which can do nothing other than help me as I go. Wish me luck!
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