What is happening those few days when exercise just doesn't come and digestion is corrupt. It can feel like a flu, a stomach bug, a total confusion. Without the muscle aches from before it has been suggested to me that it could be detox.
My body has been keeping toxins like its hoarding for an Armageddon. Where do they go? As far as my logic takes me the 'dark side' is sitting in the crevices, the shadows, waiting for an opportunity to attack.
My body hasn't gone so far as some. I'm not ready for that yet. In the final stages of recovery. where nearer normal activity is achieved, I know some patients who have had a ridiculous number of cod and flu bugs within a matter of months. The ME patient is likely to have either an over active immune system or an under active immune system. In an over active immune system- like mine- my friends will have colds, flus, my husband will complain about hacking coughs and the dreadful bugs that 'go round' at work, he brings the germs home and I catch nothing. Or so I think. I noticed last year when it was pointed out to me that an immune system in dysfunction could go into overdrive, that my colds and flus were actually present but were very mild. I had only thought that a sore throat was a symptom of ME. But that I realised that I would have this for a while and then it would go away, I might have blocked sinuses for a couple of days and then nothing. It was the over active immune system that sent me to bed for the following two weeks that gave me the clues. It was fighting so hard I had no energy to do anything else. My colds had so few symptoms other than extreme exhaustion.
A friend of mine who also has ME must have an under-active immune system- she has colds and flus like they are ganging up and persecuting her for some unknown reason.
As I have been so exhausted and unable to move when these viruses and bacterial infections hit me they sit and wait, in the muscles, body fluids- in some ME research, proteins have been found in the spinal fluid which distinguish ME patients from Lymes disease and healthy controls.(link)
All these cold and flu bugs are waiting for the body to deal with them in the proper way. For now it is the smaller every day toxins that the body has found it hard to eliminate. I am no doctor or cellular biologist, so wont attempt to explain it, but I do know that as my energy channels open up, for example the ability for the arms and hands, the legs and feet to have a more regulated temperature and a more normal blood pressure, then I will be clearing out these spaces and will notice the muscles feeling less tense as I take a day's rest.
I mustn't be so afraid of a little exhaustion as I have been before. My legs don't collapse beneath me, I just fancy a sleep on the sofa during the day, or a quieter day in general. As long as I continue to be aware of what my body needs I will be progressing well.
Showing posts with label Rest. Show all posts
Showing posts with label Rest. Show all posts
Sunday, 12 August 2012
Sunday, 17 June 2012
Now What?!
I am sitting in bed, Saturday evening, watching Pride and Prejudice-the BBC Andrew Davies adaptation- a favourite viewing for rest and recuperation.
Had an interesting day yesterday which will explain why this piece will be so short...
Quiet morning, lunch at a friend's house.
I knew I would have a restful afternoon so was not concerned at how I needed a rest. My husband was going to a funeral at 2.45pm so I was assured of peace and quiet. As he was leaving he had an altercation with next door's car and damaged both vehicles.
I will not explain why, but take it as read that my husband needs help dealing with this kind of issue and therefore I had to find more energy. Firstly managed by bursting into action, then tears and then calm-ish (more so as the afternoon went on!) organisation
To cut a long story short, we managed the problem going to a garage, a bodywork specialist, ringing the insurance brokers and talking to two different insurance departments, relaying the story twice (why?), ringing the neighbour's brother, whose car it had been and had since left and then agreeing to a takeaway for tea.
By dealing with it all yesterday afternoon we both had a reassured night's sleep and a worry-free weekend ahead. I am just coping with it today with 3 hours of sleep this afternoon and a need for hot water bottles and reassuring TV from about 1pm onwards!
Had an interesting day yesterday which will explain why this piece will be so short...
Quiet morning, lunch at a friend's house.
I knew I would have a restful afternoon so was not concerned at how I needed a rest. My husband was going to a funeral at 2.45pm so I was assured of peace and quiet. As he was leaving he had an altercation with next door's car and damaged both vehicles.
I will not explain why, but take it as read that my husband needs help dealing with this kind of issue and therefore I had to find more energy. Firstly managed by bursting into action, then tears and then calm-ish (more so as the afternoon went on!) organisation
To cut a long story short, we managed the problem going to a garage, a bodywork specialist, ringing the insurance brokers and talking to two different insurance departments, relaying the story twice (why?), ringing the neighbour's brother, whose car it had been and had since left and then agreeing to a takeaway for tea.
By dealing with it all yesterday afternoon we both had a reassured night's sleep and a worry-free weekend ahead. I am just coping with it today with 3 hours of sleep this afternoon and a need for hot water bottles and reassuring TV from about 1pm onwards!
Thursday, 14 June 2012
My Day Continued
5pm woke five minutes ago from a dozy, sleepy afternoon, drifting in and out of unconsciousness with The Chamber Of Secrets continuing beside me, keeping me sane.
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"
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!
Sunday, 20 May 2012
When making a start is just not possible
I have been there and I know what it is like. Rest is the best friend at times like these. If I needed a week in bed, with the shutters drawn and the hot water bottles on stand by, that is what I did; I spent the week in bed, with the shutters drawn and the hot water bottles on standby. My husband would prepare everything for me in the morning; even have the eggs ready-mixed to go in the microwave for my breakfast; the bread ready sliced for the toaster; a flask full of water for tea or coffee; my lunch on a covered plate, again ready for the microwave; hot water bottles done in the last minutes before he left the house in the morning and on call for a chat if I needed a friendly word of encouragement. I would be sleeping some of the day, watching TV to stop me sleeping the rest of the day and nothing much would be achieved other than making it through to him coming home, re-filling my bottles and preparing my evening meal. He would help me laugh, give me a shoulder if I needed to cry, get it all out of my system for me to tackle another day and another week in a better state or very much the same.
Giving yourself the rest is the best way to prepare for recovery. It can't happen just like that- don't let anyone tell you it can! Finding a calm state and forgetting what is going on in your body is the best way to float on through. Over the years I have had audio books, favourite films- again to make me laugh and cry. Laughter is so important, it lifts the spirits, as does a smile. Relaxing CDs are really helpful too, especially if there is pain. Calming music and sounds can relax the body and help you forget. As I mentioned in Beginning Recovery the resting environment can be so important too. My Mum used to pick fresh flowers every week, I also had artificial flowers in my room. Clean linen on the bed and a regular change of pyjamas. I buy myself fresh bedwear (well for us they are not always nightwear are they!) at least once every six months,or choose them as a Christmas or birthday present. It helps me realise that I am allowed to rest in bed, I am allowed to be comfortable and I am allowed to pamper myself even though only a few distinguished guests will see the result.
Time seemed to be my enemy, but it was not. It gave me rest, stability and it helped me find the right place to search for a solution. By calming my symptoms, time gave me hope and reason to believe and trust in recovery.
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