Had a great appointment with my cranial osteopath yesterday. He said my system was the best he has seen it since I started going there over two years ago. This is great news and made me feel really good about things. I was feeling so good about it I didn't even drive straight home, I stopped to pick up some shopping and at a friends for a drink and chat on my way home. Even when I got home I didn't collapse on the sofa for the rest of the day as I normally do after a treatment, I actually managed to cook dinner first and then took to the sofa! The treatment definitely calmed my systems internal agitation again.
Friday, 16 November 2012
Wednesday, 14 November 2012
Energy to clean
Last week I asked the cleaners that had been coming to clean for me once a week if they would mind coming once a fortnight. I wanted to see how I managed with trying to do the cleaning in the alternate weeks.
Tuesday is the day they would normally come so yesterday I set about the cleaning. In the past cleaning is something that has eaten in to my precious energy VERY quickly. A short burst of cleaning often left me with a horrible malaise and complete fatigue. Yesterday I was hoping to clean my en suite bathroom, the family bathroom, the downstairs cloakroom and the kitchen. I managed the three bathrooms in an hour and then I knew I needed a sit down and thought I would take a rest and tackle the kitchen later. Once I sat down however I realised how much energy I had used and decided that the kitchen could wait another day and that I should be happy with what I had achieved that day. This is the new sensible me talking. So, I think it went pretty well. I stopped just before I'd overdone it and I felt good about what I'd done. The cleaners will be back again next week to mop up what I fail to do. I've discovered I still don't like cleaning, but that's another issue!
Tuesday is the day they would normally come so yesterday I set about the cleaning. In the past cleaning is something that has eaten in to my precious energy VERY quickly. A short burst of cleaning often left me with a horrible malaise and complete fatigue. Yesterday I was hoping to clean my en suite bathroom, the family bathroom, the downstairs cloakroom and the kitchen. I managed the three bathrooms in an hour and then I knew I needed a sit down and thought I would take a rest and tackle the kitchen later. Once I sat down however I realised how much energy I had used and decided that the kitchen could wait another day and that I should be happy with what I had achieved that day. This is the new sensible me talking. So, I think it went pretty well. I stopped just before I'd overdone it and I felt good about what I'd done. The cleaners will be back again next week to mop up what I fail to do. I've discovered I still don't like cleaning, but that's another issue!
Friday, 2 November 2012
Sleep
Wednesday
Aaaagh! This morning I woke at 3.20am and didn't go back to sleep. I never sleep well the night after a Perrin treatment, but it's not normally that bad. Yesterday morning it was 4.15am. I laid there for a while and then got up at 5.30am. This morning I stayed in bed willing myself to go back to sleep, but it didn't happen. I can't understand why my sleep should be deteriorating when my general health is improving?
Friday
Recovery from my latest Perrin appointment on Tuesday was good, best ever actually. I'm now moving to appointments every three weeks which will save a bit of money, but I'm nervous about doing - I want to keep the pressure up on my body.
Yesterday I took the kids swimming. There are several good things about this; firstly, I organised the trip on Monday and told the children we would be going to the pool on Thursday and we did! This is called planning, something I haven't been able to do for a long time. Two things have changed to enable me to do this 1) I am feeling physically stronger a great deal of the time and 2) as a result of number 1) some sort of mental switch has happenned in my head and I am looking forward rather than just working to get through each individual day.
The second good thing was after saying on Monday that we would go swimming on Thursday we actually did. I was feeling well enough to go through the hassle of driving there and back, changing rooms, showers and getting cold in the pool whilst keeping a 6 year old occupied and safe. To someone with normal energy levels this probably doesn't sound like a big deal, but I haven't taken my son swimming on my own in over three years. If I have been in the pool with him in that time I always have Ant or a big sis there so that when I get cold, which happens pretty quickly I can get out and leave the others in the pool. Struggling to regulate body temperature is a common symptom of ME and some thing I have previously struggled with.
On top of all the above I also swam 125 metres - one lot of 75 and one lot of 50. I was going to do one more 25, but wisely stopped myself. My biceps and triceps are so weak, it is very noticeable when trying to swim. I also climbed 144 steps to the tops of different slides and got pretty cold, but I spent the whole hour in the pool.
Afterwards my thighs were so heavy, and as if they were full of lactic acid, but other than that I felt fine. I also slept really well 10pm to 4am with no disruption. Then I woke again at 5am and couldn't go back to sleep. This afternoon I was tired. I think all these early mornings are catching up with me and I went off for a 45 minute sleep this afternoon as I am going out this evening and might be a little late back. I will also be driving forty five minutes each way this evening.
The swimming expedition could still hit me tomorrow, but I'm really starting to think that it might not.
Aaaagh! This morning I woke at 3.20am and didn't go back to sleep. I never sleep well the night after a Perrin treatment, but it's not normally that bad. Yesterday morning it was 4.15am. I laid there for a while and then got up at 5.30am. This morning I stayed in bed willing myself to go back to sleep, but it didn't happen. I can't understand why my sleep should be deteriorating when my general health is improving?
Friday
Recovery from my latest Perrin appointment on Tuesday was good, best ever actually. I'm now moving to appointments every three weeks which will save a bit of money, but I'm nervous about doing - I want to keep the pressure up on my body.
Yesterday I took the kids swimming. There are several good things about this; firstly, I organised the trip on Monday and told the children we would be going to the pool on Thursday and we did! This is called planning, something I haven't been able to do for a long time. Two things have changed to enable me to do this 1) I am feeling physically stronger a great deal of the time and 2) as a result of number 1) some sort of mental switch has happenned in my head and I am looking forward rather than just working to get through each individual day.
The second good thing was after saying on Monday that we would go swimming on Thursday we actually did. I was feeling well enough to go through the hassle of driving there and back, changing rooms, showers and getting cold in the pool whilst keeping a 6 year old occupied and safe. To someone with normal energy levels this probably doesn't sound like a big deal, but I haven't taken my son swimming on my own in over three years. If I have been in the pool with him in that time I always have Ant or a big sis there so that when I get cold, which happens pretty quickly I can get out and leave the others in the pool. Struggling to regulate body temperature is a common symptom of ME and some thing I have previously struggled with.
On top of all the above I also swam 125 metres - one lot of 75 and one lot of 50. I was going to do one more 25, but wisely stopped myself. My biceps and triceps are so weak, it is very noticeable when trying to swim. I also climbed 144 steps to the tops of different slides and got pretty cold, but I spent the whole hour in the pool.
Afterwards my thighs were so heavy, and as if they were full of lactic acid, but other than that I felt fine. I also slept really well 10pm to 4am with no disruption. Then I woke again at 5am and couldn't go back to sleep. This afternoon I was tired. I think all these early mornings are catching up with me and I went off for a 45 minute sleep this afternoon as I am going out this evening and might be a little late back. I will also be driving forty five minutes each way this evening.
The swimming expedition could still hit me tomorrow, but I'm really starting to think that it might not.
Sunday, 28 October 2012
Pancreatic investigation and cranial osteopath visit
Two things to mention this week. On Wednesday I went to the hospital to see a doctor about my pancreatic function. My heart doctor had referred me I think with the idea of having an efficiency test done on my pancreas. After discussion with the doctor he decided to do a test for some kind of pancreatitis. I'm sort of expecting the blood test to come back negative. I have had lots of blood tests done over the past three years and with the exception of Dr Myhill's mitochondrial tests none of them have really found anything. He's checking my ferritin levels too as they haven't been done since January.
On Saturday Ant drove me to see the cranial osteopath with the magic hands. I hadn't been for quite some weeks but the best night's sleep I have had for ages was the night of my last visit to see him and I craved that again. Normally with two wakings in the night, I have still been waking up between 5 and 5.30am and it's too early.
As usual I'm not really sure what he did, but by the time we got home I was good for nothing and went off to bed, it was about 11am. I stayed there until about 2pm and then moved to the sofa. It's such a weired spaced out feeling. I stayed there for the rest of the afternoon. In the evening we were due to go to friends for dinner and we did, but I really didn't feel up to it and we left relatively early.
After a nights sleep I have recovered a lot, but still feel a bit "heady" and have that vague sore throat ness that I'm getting used to now.
It's been 3 weeks since my previous Perrin appointment and I'm really looking forward to going on Tuesday.
On Saturday Ant drove me to see the cranial osteopath with the magic hands. I hadn't been for quite some weeks but the best night's sleep I have had for ages was the night of my last visit to see him and I craved that again. Normally with two wakings in the night, I have still been waking up between 5 and 5.30am and it's too early.
As usual I'm not really sure what he did, but by the time we got home I was good for nothing and went off to bed, it was about 11am. I stayed there until about 2pm and then moved to the sofa. It's such a weired spaced out feeling. I stayed there for the rest of the afternoon. In the evening we were due to go to friends for dinner and we did, but I really didn't feel up to it and we left relatively early.
After a nights sleep I have recovered a lot, but still feel a bit "heady" and have that vague sore throat ness that I'm getting used to now.
It's been 3 weeks since my previous Perrin appointment and I'm really looking forward to going on Tuesday.
Monday, 22 October 2012
Perrin technique important reminders
A strange two weeks. It's been one of those times (which I have experienced before) where my body is showing signs of being run down, mouth ulcers for example but actually I feel quite well. Not sure what's going on really. I found myself leafing through Raymond Perrins book about The Perrin Technique last night and reminding myself of some of the key points. His views on the sympathetic nervous system seem to ring so true to me. I am lending the book to someone else in the village who might benefit. It's very difficult not to say to others that I know with the same condition "you MUST do this" because it is working so well for me, but I know everyone's symptoms and situation are different. I feel so lucky that financially for example I have been able to spend whatever I need in terms of treatment and I am very grateful for that.
One good thing is that I'm finding it easier to meditate again now. I've also managed a bit more reading which is useful as I have a pile of books waiting for me. This pile only ever gets bigger.
I've been attending my weekly yoga class at the therapy centre and am coming to enjoy yoga for its own sake rather than just because I think it will help me. It is the case though that a lot of the exercises we do complement the Perrin Technique well as there is lots of twisting and flexing of the spine. One of the things that I read in the Perrin book last night was that even when recovered and out of treatment you must still do your spine rotation exercises three times a day for life.
Another important fact I read whilst flicking through the book was about convalescence. It is important in this recovery period and as you start to feel better to stick to the "half rule". This being that you should only do half of what you think you are capable of doing, so, if you think you can walk a mile only do half a mile and so on. This continues to be important in the early days after completion of treatment. Of course as you start to feel fitter, then half of what you think you can do is still more.
I think it was probably a timely revisit to the book to remind me of these things. It is easy to get carried away when you're feeling good and push to the limits (Pilates class springs to mind). I also find that on good days its easy to forget to do my self treatments especially in the middle of the day as I can be busy doing something rather than focusing on my next treatment. Although this is good in one way, I mustn't let it slip, I need to carry on with the massages and rotations. I have reduced some of my supplementation though. I now only take 2grams of d-ribose twice a day instead of 5 times a day and L-carnatine only once a day. I've stopped taking ascorbic acid at the moment. I have to say I am struggling with eggs right now. Dr Myhills advice over a year ago was to have two eggs for breakfast every day. I've tried to have 2 eggs a day since then and done pretty well, but now when I think of eggs I can feel my body saying "Noooooo, please, no more eggs!" It'll be Hale & Hearty's gluten free pancakes this morning - delicious.
Look at me blogging about reducing supplementation and recovery and "after completion of treatment". This is good : )
One good thing is that I'm finding it easier to meditate again now. I've also managed a bit more reading which is useful as I have a pile of books waiting for me. This pile only ever gets bigger.
I've been attending my weekly yoga class at the therapy centre and am coming to enjoy yoga for its own sake rather than just because I think it will help me. It is the case though that a lot of the exercises we do complement the Perrin Technique well as there is lots of twisting and flexing of the spine. One of the things that I read in the Perrin book last night was that even when recovered and out of treatment you must still do your spine rotation exercises three times a day for life.
Another important fact I read whilst flicking through the book was about convalescence. It is important in this recovery period and as you start to feel better to stick to the "half rule". This being that you should only do half of what you think you are capable of doing, so, if you think you can walk a mile only do half a mile and so on. This continues to be important in the early days after completion of treatment. Of course as you start to feel fitter, then half of what you think you can do is still more.
I think it was probably a timely revisit to the book to remind me of these things. It is easy to get carried away when you're feeling good and push to the limits (Pilates class springs to mind). I also find that on good days its easy to forget to do my self treatments especially in the middle of the day as I can be busy doing something rather than focusing on my next treatment. Although this is good in one way, I mustn't let it slip, I need to carry on with the massages and rotations. I have reduced some of my supplementation though. I now only take 2grams of d-ribose twice a day instead of 5 times a day and L-carnatine only once a day. I've stopped taking ascorbic acid at the moment. I have to say I am struggling with eggs right now. Dr Myhills advice over a year ago was to have two eggs for breakfast every day. I've tried to have 2 eggs a day since then and done pretty well, but now when I think of eggs I can feel my body saying "Noooooo, please, no more eggs!" It'll be Hale & Hearty's gluten free pancakes this morning - delicious.
Look at me blogging about reducing supplementation and recovery and "after completion of treatment". This is good : )
Saturday, 6 October 2012
Tiredness
Today I have experienced the wonderful feeling of 'tiredness'. Some might think it strange that someone with Chronic Fatigue Syndrome would say this, but the sort of tiredness you get with fatigue is simply not the same as the everyday normal tiredess that healthy people experience and which I think I am experiencing now.
I had a brilliant nights sleeep last night. I slept straight through from 10pm to 6am. I honestly can't remember the last time I did that, I normally sleep and wake in three hour cycles and have more recently been waking at 5 am again.
Right now I would like to stay up and read my book group book - The Personal History of Rachel DuPree - but I would be foolish to ignore the normal, natural signs telling me to sleep.
I had a brilliant nights sleeep last night. I slept straight through from 10pm to 6am. I honestly can't remember the last time I did that, I normally sleep and wake in three hour cycles and have more recently been waking at 5 am again.
Right now I would like to stay up and read my book group book - The Personal History of Rachel DuPree - but I would be foolish to ignore the normal, natural signs telling me to sleep.
Tuesday, 2 October 2012
Pilates
On Wednesday I left the house to go to my yoga class but when I sat in the car it wouldn't start. This was very frustrating but there was nothing I could do. It made me realise how much I was enjoying the sessions that I didn't want to miss one. Anyway it opened up a new opportunity to me, I decided to try the Pilates class that happens on a Thursday instead. I knew I probably couldn't do the two classes in a week so this was a chance to try it.
The pilates class was small, just three of us and I managed to do it all. The things I seem to have problems with now are those where I'm bending over and my head is lower than my shoulders or where my arms are above my head or if I'm lying on my back with legs raised. I think it is probably something to do with the POTS syndrome. Afterwards I didn't feel as good as after the yoga class and unfortunately I had a bit of running around to do in the car afterwards so couldn't go straight home and rest. I knew by late afternoon that the Pilates class had been too much. My heart rate raised and stayed up all of Friday, my digestive system also wasn't right. Both of these now recognisable signs that I have overdone it. On Friday I felt on the brink of a relapse, with that internal feeling of agitation in my system. By Saturday I had recovered, heart rate back down again and everythingthing feeling much better again.
Interestingly, this week I have also been under some emotional stress and my body seems to be coping well with that too. All very encouraging. Anyway, this week I'll be back to the yoga class. I know now that I'm not quite ready for the Pilates. It is great though that I got through the whole of the class this week especially when I think back to my attempts to do a Chi gong class at the start of this year and how badly that went. A noticeable step forwards.
2/10/12 brain fog today.
The pilates class was small, just three of us and I managed to do it all. The things I seem to have problems with now are those where I'm bending over and my head is lower than my shoulders or where my arms are above my head or if I'm lying on my back with legs raised. I think it is probably something to do with the POTS syndrome. Afterwards I didn't feel as good as after the yoga class and unfortunately I had a bit of running around to do in the car afterwards so couldn't go straight home and rest. I knew by late afternoon that the Pilates class had been too much. My heart rate raised and stayed up all of Friday, my digestive system also wasn't right. Both of these now recognisable signs that I have overdone it. On Friday I felt on the brink of a relapse, with that internal feeling of agitation in my system. By Saturday I had recovered, heart rate back down again and everythingthing feeling much better again.
Interestingly, this week I have also been under some emotional stress and my body seems to be coping well with that too. All very encouraging. Anyway, this week I'll be back to the yoga class. I know now that I'm not quite ready for the Pilates. It is great though that I got through the whole of the class this week especially when I think back to my attempts to do a Chi gong class at the start of this year and how badly that went. A noticeable step forwards.
2/10/12 brain fog today.
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