Yes, oh, boy!
So I've not been writing much these last two days. It's because not a lot is happening. I'm more aware of me. My needs first and all that jazz! If I'm not well enough to do it, it doesn't happen.
Thankfully we had the cleaner round last night. I feel like bowing prostrations to her sometimes! As I was extra tired last week I had no energy to even put things away after I'd used them and some of the bags from holiday are still hanging around waiting for me to devote half an hour to them.
I have been managing a bit of forum chat with the yoga group. Good to know they're out there for me. I've been doing a couple of classes of Qi training. The understanding of Qi is a fascinating world. It is not a faith group but learning how to harness life energy. I certainly need a bit of life energy. So I'm giving it a try.
One book I have been picking up over the last month (it's only about 200 large print pages, so that shows you how long it can take me to read a book!) has helped me understand this more. It is about a Buddhist priest's pilgrimage to South Korea with her Master and senior Master. They climb cliff-edge mountains and wade through typhoons to visit innumerable higher-than-the-clouds monasteries and temples. She learns a lot along the way and realises that all she needs to do is let go and believe in herself. By the end, she "gets" it and her senior Master pronounces her a Master too. The Qi centre, teaches a lot of that too. We don't need to be stressed in life because the energy is there.
A lot of ME is about that. We have to let go and believe that we can recover so that we stop stressing about it so much. By decreasing the mind stress (which helps only to a certain extent!) the body stress can start to heal too. My word there is a lot of body to heal. I hate that my cells are damaged- damn that original virus!!! my muscles still ache if I do a little too strenuous yoga. I get headaches if I don't sleep well or my day has been too busy. I will be able to move on; patience is a big hurdle, it just takes time!
Showing posts with label frustrations. Show all posts
Showing posts with label frustrations. Show all posts
Wednesday, 25 July 2012
Monday, 11 June 2012
Time Shift
Three Months ago...
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
Saturday, 2 June 2012
Why Write A Blog?
All doctors keep notes to document progress. Many patients keep diaries to aid visits with specialists: How often do I...? How much... did I? These questions and answers are important to note current situation and observe, from a wider perspective, how, if and where changes can be made.
I have been writing informally for years. Also making detailed notes about particular symptoms when necessary to give clearer vision. For a patient with any condition, making notes is an ideal way to chart progress. I think this is one of the reasons I am writing a blog. It gives me clarity, helps me view the situation almost from an outsider's position. I can think how I would give advice to someone else in this position and having the inside knowledge gives me an easier task when giving that advice.
As and when something occurs to me I sit and write, or make a quick note of the subject and come back to it later. It might be that I have had an amazing moment that I just have to record- like filling the washing machine, or talking to someone! without my mind wandering, for more than an hour. This is a fabulous thing to note; as time passes these things are forgotten- especially when insufficient memory is a big issue! To look back on notes and think- 'wow, why was that such a noteworthy event?' is very empowering. Writing it down will show that getting dressed without help is so amazing now, so that in 6-12 months time when I am walking for 20 minutes without becoming breathless the previous experience may appear insignificant, but I will be reminded how far I have come.
A noteworthy occurrence might also be not such a good thing; many is the time when I have sat down, frustrated and just needed to clear my head. It is the frustrations of ME that make the note taking just as worthwhile. Frustrations with friends or doctors who don't understand or just won't try to do anything to help. Also personal frustrations, finding it so difficult to eat with a knife and fork, or not leaving the house for months on end. At these points, just making lists of what I could do was important too.
There has been many a time when I have had to sit down and prove to myself that I am ill too; which might seem very depressing and negative, but for an ME patient going through a good few months, the dips and frustrations can be forgotten and the possibility of a crash from 'overdoing' it can be denied. This is so important, as a pragmatic and realistic patient is the one who finds the right path. By occasionally writing down what I can't do I have really helped myself to realise that I need help, that I need to find recovery- it is not going to find me.
So this blog is ideal therapy for myself!
But most importantly it is to show how this illness really affects the person and it is meant to give hope to those who have the illness and help them believe that recovery is a possibility.
I have been writing informally for years. Also making detailed notes about particular symptoms when necessary to give clearer vision. For a patient with any condition, making notes is an ideal way to chart progress. I think this is one of the reasons I am writing a blog. It gives me clarity, helps me view the situation almost from an outsider's position. I can think how I would give advice to someone else in this position and having the inside knowledge gives me an easier task when giving that advice.
As and when something occurs to me I sit and write, or make a quick note of the subject and come back to it later. It might be that I have had an amazing moment that I just have to record- like filling the washing machine, or talking to someone! without my mind wandering, for more than an hour. This is a fabulous thing to note; as time passes these things are forgotten- especially when insufficient memory is a big issue! To look back on notes and think- 'wow, why was that such a noteworthy event?' is very empowering. Writing it down will show that getting dressed without help is so amazing now, so that in 6-12 months time when I am walking for 20 minutes without becoming breathless the previous experience may appear insignificant, but I will be reminded how far I have come.
A noteworthy occurrence might also be not such a good thing; many is the time when I have sat down, frustrated and just needed to clear my head. It is the frustrations of ME that make the note taking just as worthwhile. Frustrations with friends or doctors who don't understand or just won't try to do anything to help. Also personal frustrations, finding it so difficult to eat with a knife and fork, or not leaving the house for months on end. At these points, just making lists of what I could do was important too.
There has been many a time when I have had to sit down and prove to myself that I am ill too; which might seem very depressing and negative, but for an ME patient going through a good few months, the dips and frustrations can be forgotten and the possibility of a crash from 'overdoing' it can be denied. This is so important, as a pragmatic and realistic patient is the one who finds the right path. By occasionally writing down what I can't do I have really helped myself to realise that I need help, that I need to find recovery- it is not going to find me.
So this blog is ideal therapy for myself!
But most importantly it is to show how this illness really affects the person and it is meant to give hope to those who have the illness and help them believe that recovery is a possibility.
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!
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