Last night's webinar was, in part, about anxiety. It didn't all fit in with my ideas but was useful in some ways. I take notes through it when something might be helpful to remember, but I have my own take on this subject:
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.
Showing posts with label tiredness. Show all posts
Showing posts with label tiredness. Show all posts
Thursday, 21 June 2012
Thursday, 31 May 2012
Tiredness
One particular piece of knowledge has really helped me understand the illness and start recovery: How to identify different types of tiredness. It goes beyond ME and I will be pleased to be able to identify these as I recover too, but as a patient of ME it has been incredibly helpful.
The theory is, I have been working with this for the last 6 months so I will state that it is actually true, that there are four types of tiredness.
Firstly absolutely drained- Physical Tiredness. For this the legs are like jelly, the neck is struggling to hold up the head and basically the best solution is bed rest. Possibly a sleep, but most definitely removing the burden of supporting the body in any physical activity.
Secondly comes mental, or - Cognitive Tiredness. Also called 'tired and wired' This can come about as simply reading for a long time or concentrating on a confusing conversation, but can also come about as a lot of stress building up, through work, school, family etc. etc. It is a good thing to be able to recognise this. Again a sleep might help but by staying awake, if possible some gardening, yoga or a quiet walk away from any study, books, people or the internet(!), this tiredness can be combatted with a cognitive rest through physical activity. This gives the opportunity for sleepy physical tiredness to hit at the right time; in the evening nearer bedtime. Obviously dealing with the stress which caused it in the first place is a good option too!
Thirdly comes Emotional Tiredness. Suddenly wanting to cry from sheer exhaustion for no apparent reason. This has happened to me over the years when I have had to sit down and burst into tears after a busy day or when we have been out and I have seen too many people in too short a time. It is exhausting, the body can't cope. It doesn't go into stress mode it just collapses and says "I have had enough!"
Environmental Tiredness is the last one. I knew I had been reacting to feeling tired in different ways during the years and sometimes it worked, sometimes it didn't.(I know my parents had always said to our complaints of "I'm tired" or "I'm bored" quite simply "try and find something different to do") and it is this principle that works here. By being environmentally tired the solution is to try a different activity. You may have been slouching on the sofa for a couple of hours watching a film, suddenly the credits finish rolling, you stretch, yawn and go into the kitchen to empty the dishwasher. It works and within 5 minutes you're not that tired any more and want to go to the local gastro pub for dinner!
Now I think about why I am tired before I react to it. Yes, sometimes I just need a sleep, but other times I will try a different activity before putting my head on the pillow. With the heat still pouring down on us yesterday I was lethargic in the morning. This knowledge really helped me really think about the day. By getting out of bed yesterday lunchtime, after a morning sleep and chat on the 'phone, I came into the kitchen, decided on a muffin recipe (link) so moving around in one of my favourite places in the house, calm and comfortable, without a great deal of cognitive effort. I used a bit of energy and gave myself a couple of ticks towards sleepiness for last night.
The different stages of the illness dictate how much you can influence this sometimes- after a crash stage, pretty much all that is possible is sleep and non- activity rest, but as the progress starts and moves on, more and more control can be taken back. It is a great tool to have and I thank the researchers and study groups for giving it to me. (link)
The theory is, I have been working with this for the last 6 months so I will state that it is actually true, that there are four types of tiredness.
Firstly absolutely drained- Physical Tiredness. For this the legs are like jelly, the neck is struggling to hold up the head and basically the best solution is bed rest. Possibly a sleep, but most definitely removing the burden of supporting the body in any physical activity.
Secondly comes mental, or - Cognitive Tiredness. Also called 'tired and wired' This can come about as simply reading for a long time or concentrating on a confusing conversation, but can also come about as a lot of stress building up, through work, school, family etc. etc. It is a good thing to be able to recognise this. Again a sleep might help but by staying awake, if possible some gardening, yoga or a quiet walk away from any study, books, people or the internet(!), this tiredness can be combatted with a cognitive rest through physical activity. This gives the opportunity for sleepy physical tiredness to hit at the right time; in the evening nearer bedtime. Obviously dealing with the stress which caused it in the first place is a good option too!
Thirdly comes Emotional Tiredness. Suddenly wanting to cry from sheer exhaustion for no apparent reason. This has happened to me over the years when I have had to sit down and burst into tears after a busy day or when we have been out and I have seen too many people in too short a time. It is exhausting, the body can't cope. It doesn't go into stress mode it just collapses and says "I have had enough!"
Environmental Tiredness is the last one. I knew I had been reacting to feeling tired in different ways during the years and sometimes it worked, sometimes it didn't.(I know my parents had always said to our complaints of "I'm tired" or "I'm bored" quite simply "try and find something different to do") and it is this principle that works here. By being environmentally tired the solution is to try a different activity. You may have been slouching on the sofa for a couple of hours watching a film, suddenly the credits finish rolling, you stretch, yawn and go into the kitchen to empty the dishwasher. It works and within 5 minutes you're not that tired any more and want to go to the local gastro pub for dinner!
Now I think about why I am tired before I react to it. Yes, sometimes I just need a sleep, but other times I will try a different activity before putting my head on the pillow. With the heat still pouring down on us yesterday I was lethargic in the morning. This knowledge really helped me really think about the day. By getting out of bed yesterday lunchtime, after a morning sleep and chat on the 'phone, I came into the kitchen, decided on a muffin recipe (link) so moving around in one of my favourite places in the house, calm and comfortable, without a great deal of cognitive effort. I used a bit of energy and gave myself a couple of ticks towards sleepiness for last night.
The different stages of the illness dictate how much you can influence this sometimes- after a crash stage, pretty much all that is possible is sleep and non- activity rest, but as the progress starts and moves on, more and more control can be taken back. It is a great tool to have and I thank the researchers and study groups for giving it to me. (link)
Wednesday, 30 May 2012
Banana Wednesdays
They are in the oven. Banana and chocolate chip, oat-flake muffins. Well I needed an easy recipe as I was determined to achieve my Wednesday goal of Muffin Making. The difficulties today are
a. I am still tired thanks partly to the weather,
b. I am hobbling thanks to my hips stiffening this morning for no particular reason that I can remember,
c. Ingredients in the house are not very compatible.- half a packet of chocolate chips, only 2 small over-ripe bananas which I knew had to factor in somewhere but couldn't be held to blame if they didn't give a great deal of flavour, not a lot of flour and I can't cook with nuts as OH can't take them to work (he works in a food manufacturing lab; testing and tasting flavours: NO Nuts or Sesame allowed)
Thanks to getting the ground work done, ingredients on table, scales at the ready, mixer clean and on standby and oven heated with muffin tray organised, I completed in quick time. Less than 15 minutes for the whole job. Banana not particularly well mashed as my arm is also aching and I mightn't get full marks for the mixing of liquids; but a lumpy result in muffins is recommended by some I am sure(?!)
I'm pleased I have done this, an achievement for the day. Some days drag with so little activity- especially with this hotter weather. Sitting with a nice view or audio book has to be done without the mind wandering or frustration and worries taking over, and that can be difficult. 20 minutes of something which will last for the rest of the week is great. Obviously 6 months of recovery will last for the rest of my life, but it is a tough job to remember that sometimes!
a. I am still tired thanks partly to the weather,
b. I am hobbling thanks to my hips stiffening this morning for no particular reason that I can remember,
c. Ingredients in the house are not very compatible.- half a packet of chocolate chips, only 2 small over-ripe bananas which I knew had to factor in somewhere but couldn't be held to blame if they didn't give a great deal of flavour, not a lot of flour and I can't cook with nuts as OH can't take them to work (he works in a food manufacturing lab; testing and tasting flavours: NO Nuts or Sesame allowed)
Thanks to getting the ground work done, ingredients on table, scales at the ready, mixer clean and on standby and oven heated with muffin tray organised, I completed in quick time. Less than 15 minutes for the whole job. Banana not particularly well mashed as my arm is also aching and I mightn't get full marks for the mixing of liquids; but a lumpy result in muffins is recommended by some I am sure(?!)
I'm pleased I have done this, an achievement for the day. Some days drag with so little activity- especially with this hotter weather. Sitting with a nice view or audio book has to be done without the mind wandering or frustration and worries taking over, and that can be difficult. 20 minutes of something which will last for the rest of the week is great. Obviously 6 months of recovery will last for the rest of my life, but it is a tough job to remember that sometimes!
Friday, 18 May 2012
Chocolate Wednesdays
I have talked about my restricted diet. Because of my Candidiasis my everyday food has been restricted for almost twenty years. No sugar, including most fruits, no refined carbohydrates, no cheese or any other form of yeast. Thanks to these restrictions my digestion is finally showing signs of returning to pre-candida acceptance. So much so that I have... eaten a chocolate muffin!
One each day for the last three days. Wow. I remember those days so well. The recipe for my Wednesday bake had to be easy to create-as mentioned in Making Muffins! I also needed a recipe without milk and baking fat as we were seriously diminished in the fridge department. Thankfully my wonderful Muffins book, a present from my sister last year, proved very helpful. Replacing milk with an instant coffee/150ml water mix was the answer and I also searched for an option with oil instead of baking fat. So in went the flour, baking powder and bicarbonate of soda. The mixer was ready. I then had a sit down, while the coffee cooled down and prepared the muffin cases. Next was yoghurt, sugar, egg, oil, cocoa powder and the coffee. It looked wonderful all stirred together in the Pyrex jug. Like a rich, thick, gooey sauce ready to pour over ice cream or a sticky sponge pudding.
So I slowly poured it into the mixer and let it mix.
I half filled each muffin case and then added an extra touch-a piece of plain chocolate in the centre of each, before dividing out the rest of the indulgent concoction!
Into the oven and 20 minutes to relax. Wednesday was a good day; sunny, although not really warm enough to sit outside for longer than ten minutes. I managed to rinse and tidy up most of the bowls and spoons I had used for the baking as well as putting all the ingredients away. I had an afternoon in bed with the BBC adaptation of Cranford for company, and also achieved a bit of knitting.
I am getting used to being physically tired. Wednesday was one of those days. It felt great to get to bedtime being exhausted on the outside. My tiredness is sometimes all on the inside, I feel the whole of my body being dragged to the floor. My mind becomes clouded, with very little retention of anything much that is taken in. Today is one of those days. On a tired day I try to lift myself above it- instead of struggling with words, I'm searching through a thesaurus as I'm writing! My head needs support from an arm on a table, my eyes are battling the lids. I'm caught in a loop, every minute thinking 'I'll be better in a minute'! Of course this rarely works, as I am actually exhausted! So I decide to float. I observe the anarchy of my body, the pleasures I can still enjoy in this situation. I eat a fruit yoghurt, watch a favourite film, choose a different chair and bob about in middle of the ocean knowing that shore will find me again.
One each day for the last three days. Wow. I remember those days so well. The recipe for my Wednesday bake had to be easy to create-as mentioned in Making Muffins! I also needed a recipe without milk and baking fat as we were seriously diminished in the fridge department. Thankfully my wonderful Muffins book, a present from my sister last year, proved very helpful. Replacing milk with an instant coffee/150ml water mix was the answer and I also searched for an option with oil instead of baking fat. So in went the flour, baking powder and bicarbonate of soda. The mixer was ready. I then had a sit down, while the coffee cooled down and prepared the muffin cases. Next was yoghurt, sugar, egg, oil, cocoa powder and the coffee. It looked wonderful all stirred together in the Pyrex jug. Like a rich, thick, gooey sauce ready to pour over ice cream or a sticky sponge pudding.
So I slowly poured it into the mixer and let it mix.
I half filled each muffin case and then added an extra touch-a piece of plain chocolate in the centre of each, before dividing out the rest of the indulgent concoction!
Into the oven and 20 minutes to relax. Wednesday was a good day; sunny, although not really warm enough to sit outside for longer than ten minutes. I managed to rinse and tidy up most of the bowls and spoons I had used for the baking as well as putting all the ingredients away. I had an afternoon in bed with the BBC adaptation of Cranford for company, and also achieved a bit of knitting.
I am getting used to being physically tired. Wednesday was one of those days. It felt great to get to bedtime being exhausted on the outside. My tiredness is sometimes all on the inside, I feel the whole of my body being dragged to the floor. My mind becomes clouded, with very little retention of anything much that is taken in. Today is one of those days. On a tired day I try to lift myself above it- instead of struggling with words, I'm searching through a thesaurus as I'm writing! My head needs support from an arm on a table, my eyes are battling the lids. I'm caught in a loop, every minute thinking 'I'll be better in a minute'! Of course this rarely works, as I am actually exhausted! So I decide to float. I observe the anarchy of my body, the pleasures I can still enjoy in this situation. I eat a fruit yoghurt, watch a favourite film, choose a different chair and bob about in middle of the ocean knowing that shore will find me again.
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